Indian movies depicting dementia

While many Indian movies show seniors and problems of ageing, recently some movies have also started showing persons with dementia. This is often one of the few exposures for Indian viewers to dementia. Many viewers therefore tend to assume that what they see in the movie as a character’s dementia behavior and problems is medically correct. They may also assume that all dementia situations are like the one they saw. But movies are not documentaries, and they are not made to provide the audience a correct and comprehensive understanding of all types of dementia and care situations.

This page lists Indian movies where a main or important character has dementia (either duly diagnosed as dementia, or vaguely mentioned as possible dementia). A brief overview is provided for each movie. This can help people understand which aspects of dementia and care the movie includes, and how reliable this movie depiction is. It can also help families know what others may be assuming about dementia because they have seen a particular movie. The page also lists movies that depict someone with dementia only briefly or superficially (often just for a plot twist) or are even outright misleading about dementia. The page was updated in July 2020 to include a section on short movies available on dementia, and also a listing of plays.

The reviews and comments below contain spoilers.

One short Tamil movie that depicts the impact of COVID on care of someone with dementia, through a simple episode is Yashoda. Read about it in our section on small movies below.

Movies with major dementia-related depiction (recent/ still available as DVD or for online viewing)

Thanmathra (Malayalam) തന്മാത്ര

തന്മാത്ര (Thanmathra) (Malayalam) , a critically-acclaimed award-winning Malayalam film, was made in 2005. It centers around an intelligent, active and popular Govt. employee Ramesan (played by Mohan Lal). The movie shows him slip into early onset dementia. He is still in employment, and with school-going kids, when he starts facing cognitive problems. Several small problems are shown, and they keep increasing and becoming more obvious and serious. Initial symptoms are assumed to be stress, but as he deteriorates and the behavior becomes distinctly odd, people around him realize they need medical advice. The movie shows the diagnosis, and the way care begins. Mohan Lal’s acting is excellent. Depiction of his early symptoms is very detailed, but the later decline and care work is compressed and rushed through. The film is considered one of the best dementia films in India, and has been used by many doctors and dementia organizations to ensure the medical aspects were properly explained and depicted. Relevant links: Wikipedia page on Thanmatra Opens in new window, a review on swapnawrites.wordpress.com Opens in new window.

Usefulness/ reliability note: The film is useful to understand possible ways early symptoms of dementia may be present, and the diagnosis process. It gives some insight on possible financial, social, and personal impact of young-onset dementia. It assumes a predominantly understanding and supportive environment which is not typical of most of India, and does not give enough insight into typical tough, heart-breaking situations and care challenges that early-onset dementia often results in for families. Late-stage care and challenges are not covered.

How to watch: You can view the movie on Hotstar. The DVD, earlier available on Amazon.in, does not seem to be available now, but please keep checking on online stores. Alternate spellings used on the Internet: Thanmathra, Thanmatra

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Mai (Hindi) माई

माई (Mai) (Hindi), a 2013, is a family drama where Asha Bhosle plays a mother with Alzheimer’s Disease, and Padmini Kolhapure is one of her daughters. The film revolves around family conflicts and drama around which sibling should look after the mother, and Mai’s behavior/ deterioration. Mai covers a range of changed behavior typically seen in someone with AD, such as wandering, confusion, accusing the maid of theft, and also shows typical family reactions. The medical angle is well done and fairly complete; we see the doctor asking her questions to diagnose, and also telling the daughter what to expect. There are a few short-cuts, of course, but then this is a movie. The family drama element is around sibling conflict and resentment about care, and also resentment of the son-in-law and granddaughter resisting Mai’s presence. Sideline issues about negligence are also present. Mai’s deterioration is very rapid, however, not giving viewers or the family time to adjust to the situation, and not allowing many disease-related angles to develop. While the film does a fair job of depicting dementia challenges, the family approach shown leaves the impression that nothing else could have been done. The family’s approach lacks any attempt to communicate or resolve issues, prevent crises and problems, etc. Relevant links: Wikipedia page on MaiOpens in new window, a review on swapnawrites.wordpress.com Opens in new window.

Usefulness/ reliability note: The film provides a useful depiction of the types of behavior challenges and family situations and conflicts that some families may face. However, for someone trying to understand how to help someone with dementia, the film can be distressing/ misleading/ depressing, because it dramatizes the problems. The film does not provide viewers any hint or data to suggest that there are ways to improve communication, reduce conflict, and improve the quality of life. The film may mislead viewers into erroneously thinking that nothing can be done to adjust with or to help someone deteriorating with Alzheimer’s.

How to watch (rechecked Feb 2019): The DVD is available (e.g., at Amazon.in Opens in new window).

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Astu (Marathi)v अस्तु!

अस्तु! (Astu – So Be It) (Marathi): This 2013 movie is about a Sanskrit scholar who has dementia and wanders off. Starring includes Dr. Mohan Agashe , Iravati Harshe , Milind Soman , Amruta Subash ,and others. Dr. Mohan Agashe, the actor who plays the scholar with dementia, is a psychiatrist and a veteran, respected Marathi actor. The movie starts with the incident where the wandering happens and combines flashbacks as well as scenes from the present to portray the scholar in his days before dementia and as the dementia grows. Early symptoms, the suspicion of something being wrong, the diagnosis, the growing symptoms are all shown along with the adjustments and problems faced by his daughter and her family because of the situation. The wandering scholar is attracted to an elephant, and tags along with the mahout and his daughter. As he does not give his name or address, they take him with them, and treat him with affection and respect, viewing him as a holy man who has become childlike. The police finally manage to locate him and reunite him with his daughter and family. Characterization is very well done, and the acting is excellent.The movie has received very good reviews from critics and been appreciated by activists in the domain of dementia and ageing. Trailer: ASTU “SO BE IT” Opens in new window. Also, Facebook page of AstuOpens in new window.

Usefulness/ reliability note: The film provides a good depiction of the growing disorientation and memory problems of the scholar, and its impact on the family and the decisions they take. The movie’s weaving of the past and present gives a balanced picture, letting viewers see the man before dementia and the changes caused by dementia. The depiction makes it clear that dementia is a medical condition. However, the scholar is a mild-mannered man, and even with the dementia symptoms growing, apart from a few minor incidents, he does not show the severe behavior changes like anger, hostility, violence, severe delusions, accusations, etc. So one caution: this movie’s depiction should not lead viewers to assume that everyone with dementia will remain mild and affectionate all through. The movie does not give any insight about the more advanced stages of dementia.

How to watch(rechecked Feb 2019): The movie can be seen on Amazon Prime Video. Some special screenings for dementia awareness have also been arranged by requesting the producers/ directors.

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Godhi Banna Sadharane Mykattu (Kannada)ಗೋಧಿ ಬಣ್ಣ ಸಾಧಾರಣ ಮೈಕಟ್ಟು (Has Tamil version also)

ಗೋಧಿ ಬಣ್ಣ ಸಾಧಾರಣ ಮೈಕಟ್ಟು (Godhi Banna Sadharane Mykattu) (Kannada) , a 2016 movie starring Anant Nag is a critically acclaimed, award-winning movie. Venkob Rao (Anant Nag) has Alzheimer’s and lives in an old age home because his son is in another city. One day, because of his son’s mistake, he goes missing. The story is about how Anant Nag gets embroiled in a crime, and ends up living with a family that the gangster is holding up, and how his words and actions affect people around him. In a parallel thread, his son and the doctor from the old age home, keep looking for him, and we see the other, younger side of Venkob Rao and how he lived his life and cared for persons around him. Anant Nag’s acting is excellent, the diagnosis and other information given about dementia is reliable, and the movie also shows how interactions with persons with dementia can be enriching and valuable to everyone. Characterization is very well done. Wikipedia page: Godhi Banna Sadharana Mykattu Opens in new window.

A Tamil remake of the film, 60 Vayadu Maaniram (60 வயது மாநிறம்) (also called Arubathu Vayadu Maaniram), was released in 2018. Prakash Raj plays the role of the person with dementia in this. The full movie can be seen on Youtube (alas, no subtitles) at 60 Vayadu Maaniram | Tamil Full Movie | Prakash Raj | Vikram Prabhu | Samuthirakani Opens in new window.

Usefulness/ reliability note: The film provides a good depiction of the confusion of dementia and of a situation when young, busy children have to decide how to balance valuing their relationship and care work, as against career ambitions. The movie’s weaving of the past and present of the character serves well to emphasize the personhood of the person with dementia. The movie provides an impressive depiction of how a mild-mannered but very disoriented person with dementia can enrich lives of people around him, and be accepted and loved even by strangers. A caution, though: all this is shown with respect to a character who is by nature mild and affectionate and does not show aggression, hostility, or other extreme negative behaviors. This should not be extended to assume that everyone with dementia will remain mild and affectionate all through.

How to watch (rechecked Feb 2019): The DVD of the movie is available (like Amazon.in Opens in new window). Or view it on Hotstar.

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Maine Gandhi ko Nahin Maara (Hindi) मैंने गाँधी को नहीं मारा

मैंने गाँधी को नहीं मारा (Maine Gandhi Ko Nahin Mara) (Hindi) is a critically acclaimed 2005 film with a social message (this “moral” becomes obvious at the end). The main character, a retired Hindi professor, Uttam Chaudhary (Anupam Kher) develops dementia and the film depicts his changed behavior and the challenges it poses to the family that struggles to cope, mainly the daughter Trisha (Urmila Matondkar). Both Kher and Matondkar depict their respective characters superbly. The movie does a tremendous job of depicting initial symptoms, a spurt in the symptoms, the problems the family faces, how the family rallies around and reaches out to him. Love and affection are depicted, as are the very tough situations created because of the delusions and challenging behavior, and the family conflicts, social problems, and problems with the daughter’s prospective marriage. The film also includes scenes that show how the family members can interact with someone delusional/ difficult to communicate with. However, the film also has a twist ending that can be misleading. Also, the diagnosis process is vaguely incomplete and uses terms like “dementia, pseudo-dementia, Alzheimer’s kind of dementia”. Relevant links: Wikipedia page on Maine Gandhi ko Nahin Maara Opens in new window, two blog entries discussing the story and the ending, including what the director says about them a detailed review on swapnawrites.wordpress.com Opens in new window, a discussion on how fiction sometimes takes some license while depicting illnesses Opens in new window. Also, for the type of dementia mentioned, see Wikipedia page on Pseudodementia Opens in new window.

The movie moves to a climax where we finally get to know more about Kher’s thinking, his stress, conflict, depression, etc., and are informed about the “moral” message in a courtroom scene that ends the film. The end unfortunately leaves a misleading impression that such dramatic interventions can reverse dementia – a plot twist not based on medical evidence. (see links below to learn more about the plot and understand the ending)

The film is relatively non-committal about the diagnosis. The phrases used are “dementia, pseudo-dementia, Alzheimer’s kind of dementia” but nothing more definite is said. The diagnosis process is not shown in detail. (Pseudodementia is a term used by some doctors for situations where dementia symptoms are caused by some treatable underlying cause. The term is usually used for depressive pseudodementia, where treating the depression can remove the dementia symptoms.) .

Usefulness/ reliability note: The film provides an excellent depiction to understand one possible scenario of how symptoms may appear and the sort of challenges they may present, and how care can be done. The behavior challenges, family conflicts and social problems shown give an insight into possible problems families may face. However the diagnosis aspect is left nebulous, and the movie may mislead viewers into thinking that the type of dramatic intervention shown in the movie is medically safe and effective in reversing dementia. Viewers should talk to doctors to understand what appropriate interventions can be tried out.

How to watch (data from July 2020): DVD can be purchased. Flipkart.com link to buy the DVD Opens in new window

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Mayurakshi (Bengali) ময়ুরাক্ষী

ময়ুরাক্ষী(Mayurakshi) (Bengali): This movie, released in December 2017, is directed by Atanu Ghosh. Starring includes Soumitra Chatterjee, Indrani Haldar, and Prasenjit Chatterjee. This award-winning movie explores the father-son relationship between a 84-year-old former professor of History with dementia and his middle-aged son Aryanil who is visiting from the USA. The father is shown having several cognitive problems, and viewers see their impact on the son and home staff, the social setting, etc. There are many situations caregivers can relate to. However, though the director has mentioned dementia in his IMDB summary of the story Opens in new window, viewers unfamiliar with dementia would only see it as a sensitive portrayal of father-son interactions and not get any information or insight into dementia as a serious medical condition that impacts the person and family. The word “dementia” is mentioned only once in the entire movie by a doctor while he is discussing multiple factors why the father may have delusions that affect his judgment (“neurological dysfunctions – confusion, depression and dementia”). There is no clear dementia diagnosis. The movie has nothing about how dementia may progress and how the care challenges may increase or how to cope, etc. The end is abrupt and unsatisfactory, an observation shared by some other reviewers. See a review by a caregiver: Thoughts, words, memories: ‘Mayurakshi’ and dementia Opens in new window. The Wikipedia page is here: Wikipedia page on Mayurakshi Opens in new window. Official movie trailer on Youtube: Mayurakshi | Official Trailer Opens in new window. Facebook page: Facebook page of “Mayurakshi – The Movie” Opens in new window.

Usefulness/ reliability note: The film provides a good depiction of the initial symptoms and how they impact the family and care. Unfortunately, the movie’s depiction of the diagnosis process is very sketchy and incomplete. There is no information on dementia in medical terms, such as what it involves, how it progresses, what care challenges may happen, how to help the person, and so on. The movie seems more around ageing and family interactions and is not effective in conveying dementia as a serious, progressive condition with associated care challenges. The movie does not convey anything about advanced stages of dementia.

How to watch (rechecked Feb 2019): The movie is available as a DVD (like at Amazon.in Opens in new window)It can also be viewed on Netflix.

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Smile Please (Marathi) स्माईल प्लिज

स्माईल प्लिज (Smile Please) (Marathi): Released in July 2019, this movie is about a young award-winning photographer Nandini (played by Mukta Barve) who develops early-onset dementia. The movie shows how she copes and how family and friends help her remain active so that she is able to do things that give her fulfillment and meaning even though she is suffering decline. In addition to Mukta Barve, the cast includes Lalit Prabhakar, Prasad Oak, Satish Alekar, Aditi Govitrikar, and Trupti Khamkar. The movie starts with Nandini making small mistakes that hint at mild memory problems but when there is a goof up that shakes her up, she contacts a doctor friend who does a checkup and gives a diagnosis of early onset dementia. Initially, Nandini begins to withdraw but then a house guest takes on the role of helping her do more interesting work in the area of her passion – photography – and Nandini is able to achieve an exhibition of her own with the help of all the support she gets. The movie includes family dynamics (such as an alienated daughter who lives with Nandini’s ex-husband) but by and large, the environment is very supportive.

The movie differs from other dementia movies in many interesting ways. Nandini is self-aware enough to seek diagnosis, process it, and share it with her family. The doctor, who is also a friend, explains the diagnosis sensitively, suggests taking it step-by-step and to stay positive. She also guides the family and regularly engages Nandini in suitable cognitive exercises. Medical information shared through the movie is useful and balanced. While the incurable nature of dementia is clearly explained, the quality of life aspect is clearly the focus. Nandini is aware of the inevitable decline and makes an effort to use various ways to manage herself as decline happens. She is open about her situation. The overall portrayal is sensitive, powerful, and positive. Wikipedia page: Smile Please (2019 film) Opens in new window.

Usefulness/ reliability note: The film provides a very good case study of how someone whose dementia is detected early enough can adjust to the situation and can, with the help of family and friends, do things she enjoys and finds meaningful in spite of dementia. For those wondering how to support someone in early dementia, this portrayal shows a balance between a positive approach and facing the reality of decline of a progressive condition. The movie shows the importance of support. The diagnosis process is shown clearly, and the medical explanations are clear and useful. Viewers should note, however, that the movie does not depict the challenging behaviours persons with dementia may show like anger, hostility, violence, severe delusions, accusations, etc. Viewers should not assume that everyone with dementia will be free of such severe behaviour changes. The movie does not give any insight about the more advanced stages of dementia. It also shows a supportive environment, which is, alas, not (yet) typical.

How to watch(rechecked September 2019): The movie can be seen on Amazon Prime Video.

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Sraboner Dhara(Bengali) শ্রাবনের ধারা

শ্রাবনের ধারা(Sraboner Dhara) (Bengali): This movie, released in February 2020, is directed by Abhijit Guha. Starring includes Basabdatta Chatterjee, Soumitra Chatterjee, and Parambrata Chattopadhyay. The story looks at human relationships, using multiple interwoven plot threads. The protagonist, Dr.Nilabho Roy (Parambrata Chatterjee), is a neurologist who is a very professional and concerned doctor, but also facing problems balancing his professional work with family and relationships. Dr. Amitava Sarkar, a patient of his, is diagnosed with dementia, and is being cared for by his young second wife who pretends to be his first wife as that is what the patient feels comfortable with, but this adds a plot twist. The story uses this and some other plot threads to make the doctor realize he needs to reconcile with his wife. The acting is good and portrayal sensitive, but the plot is shallow and simplistic in parts and leaves many aspects of dementia and care unexplained. See the Wikipedia page on Sraboner DharaOpens in new window, Youtube: Sraboner Dhara (শ্রাবনের ধারা ) | Official Trailer Opens in new window

Usefulness/ reliability note: Unfortunately, the movie is unsuitable to understand dementia and care. The dementia thread of the movie uses only a hospital setting with no explanation why the patient needs to be admitted. Viewers may assume (wrongly) that hospital stay is required for investigations and treatment (usually not so). The diagnosis is confusing. At admission time, the doctor says “multiple small strokes, lacunar type” but minutes later, before the MRI or other test reports are available, he calls it Alzheimer’s, even after the wife says the onset was sudden. Later, the doctor uses vascular dementia and Alzheimer’s interchangeably and the wife calls it Alzheimer’s. The formal discussion of the diagnosis was briefer and less informative than in other recent movies. Care was mentioned but lacked specifics needed to plan the future. The main symptom shown was memory loss and some confusion, mostly through his mistaking the second wife for the first wife and forgetting more recent events like his second marriage. The movie does not show the impact on ADLs, social interactions etc (on either patient or caregiver) due to the hospital setting. A mystery is built around the second wife but unclear why she concealed facts from the doctor even when asked for details. The ending is strange and “optimistic” but with unresolved logistic aspects – such as how the wife handled care and continued to live with him while pretending she was a stranger. There was nothing on what progression would look like or on advanced stage care.

How to watch (data from April 2020): The movie is available on the Bengali online streaming platform, Hoichoi.

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Others

60 Vayadu Maaniram (other names: 60 Vayadhu Maaniram, Arubathu Vayadu Maaniram), the official Tamil remake of Godhi Banna was released in August 2018. The movie is currently not available in movie theaters or online, but may soon be made available. See Wikipedia page here Opens in new window. See movie trailer here Opens in new window. More will be posted as and when information becomes available.

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Other dementia movies that have significant depiction but are not available any more

Movies in this section had a significant depiction of dementia and had received good reviews. They were considered useful to understand dementia. Unfortunately they are no longer available in cinema halls, as DVDs, or for online viewing. They are listed here as they may become available later or it may be possible to contact the directors and get a special screening. If you have any updates about their availability, please let us know at dementiacarenotes@gmail.com, thanks!

धूसर (Dhoosar) (Marathi)

धूसर (Dhoosar) (Marathi) is a 2011 film, directed by Amol Palekar. The story is about a mother-daughter relationship where the mother gets Alzheimer’s and the daughter is shocked to find a stranger living with her for the last two years when the daughter was not there. As per published reviews, the film is a multi-layered, sensitive depiction of how the mother changes with her Alzheimer’s. A news report here Opens in new window, and a movie trailer is available on Youtube: Dhoosar (Official_Movie Promo) on Full2marathi.com Opens in new window.

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Life Flows On (English)

Life Flows On (English) was released in Oct 2016. Starring includes Tom Alter. See their Facebook page: Life Flows On Opens in new window. The official movie trailer is available on Youtube: Life Flows on Official Trailer Opens in new window. You can also contact them using pr.thevnfilms@gmail.com. The movie was screened as part of a dementia awareness campaign, and was well received. It is considered a sensitive portrayal of dementia and its impact on day-to-day life and the social stigma around dementia Here is a Facebook post on one such event Opens in new window. You can see if they will arrange a special screening for you (the last such screening, as per their FB page (checked in Feb 2019) was in January 2019.

Other movies with a person with dementia(lower/ nominal dementia-related depiction or misleading depiction)

Movies in this section have some element of dementia, but are not recommended to get a better understanding of dementia. Many have some character who has dementia, often a parent, but the movie has very little depiction of dementia and its impact. Usually the dementia is used in the plot to restrict choices a hero has/ explain away some decisions (this type of approach is often called a “plot device”). This minimal dementia depiction may be accurate or may be stereotypical/ misleading. Some have a major character with dementia, but the portrayal is either very shallow or is downright misleading.

As these movies are NOT recommended for understanding dementia, the coverage below does not include links on how to view them.

Black (Hindi)

ब्लैक (Black) (Hindi): This 2005 movie is a critically-acclaimed, successful movie that stars Amitabh Bachchan and Rani Mukherji and centers around Rani Mukherji and her multiple challenges and on Amitabh Bachchan’s role as a teacher. Bachchan develops Alzheimer’s Disease later, a plot twist to show reversal of roles where the student (Mukherji) now helps her ex-teacher(Bachchan). The movie includes some good scenes where Bachchan shows the early confusion/ disorientation. However, it does not show enough of the deterioration or problems of daily life, etc. The onset and progression of Alzheimer’s is not fleshed out. The medical situation is barely dwelt on. Bachchan is even shown chained to the bed with metal chains in a hospital, an unacceptable approach that should not be considered normal; such restraining is not acceptable and not the procedure that hospitals should follow. The movie is sometimes listed as a movie depicting “dementia”. While “Black” does give some idea of dementia, it is (for reasons given above) not recommended for understanding dementia. Relevant links: Wikipedia page: Black Opens in new window, a detailed review with respect to dementia depiction Opens in new window.

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House Owner (Tamil)

House Owner, Tamil, (released June 2019) is a story about an elderly couple stuck in a house in Chennai floods. The husband, an ex-army man, has Alzheimer’s, and is stubborn about not moving out to a safer place because he is the “house owner”. The story alternates between two timelines – the current one, where the waters are rising and begin entering the house and the wife keeps trying (unsuccessfully) to make her husband move out – and the past, which the husband keeps slipping back into, when they were a young, playful couple very much in love. The dementia-induced stubbornness and disorientation of the husband is a major determinant of the couple’s problems and tragedy in face of the Chennai floods. Unfortunately, the diagnosis is mentioned only fleetingly in the beginning, and no medical angle is shown, nor is the prognosis mentioned. The changed behavior – repetitive actions, inability to understand or remember simple instructions, disorientation etc – are very well shown – sensitive and very well-acted. The wife’s handling of the situation is also very well acted – patience, with some tinges of irritation and helplessness, which gets worse as the flood situation worsens and panic begins. However, the movie does not show any other interactions or impact. The movie is rather depressing and gives no hope — it makes tragedy seem inevitable. Though the depiction is authentic, the hopelessness created around the impact of the changed behavior makes it a negative portrayal and unsuitable for explaining dementia. The movie is NOT recommended for anyone to get any idea of dementia.. Wikipedia page: House Owner Opens in new window.

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Mango Dreams (English)

Mango Dreams (English): Released in 2016, this movie is about a Hindu doctor who develops dementia and wants to resolve some past issues before the dementia gets worse, and a Muslim autorickshaw driver who takes him on a long road journey to do so. The movie is about relationships and memories, not about dementia. The doctor’s dementia is a plot angle to provide a reason for his undertaking the journey, but dementia symptoms are barely visible or mentioned in the movie after a few initial scenes. Dementia depiction is shallow and patchy. The movie does not provide any understanding of dementia or its progression or care challenges. It gives no medical understanding of the condition. Though “dementia” is mentioned in the movie’s blurbs and reviews, the movie is NOT recommended for anyone to get any idea of dementia.. Facebook page: Mango Dreams Opens in new window. Official movie trailer: Mango Dreams Opens in new window. Also, the movie’s IMDB page Opens in new window and Wikipedia page Opens in new window. [

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Listen…Amaya(Hindi)

Listen…अमाया(Listen… Amaya) (Hindi), a 2013 movie, stars Farooq Shaikh, Deepti Naval and Swara Bhaskar. The film, set in Delhi, shows the interactions between Leela (a widow who runs a library cafe, played by Deepti Naval), a widowed photographer, Jayant ‘Jazz’ (Farooq Shaikh) and Leela’s daughter, Amaya (played by Swara Bhaskar). The movie is about a book that Amaya and Jazz work on together, which involves their roaming around in Delhi; also the movie shows the developing relationship between Leela and Jazz and the conflicts around it. The dementia aspect is subtle and only mentioned at the end as an explanation of some strange behavior and episodes around Jayant. The movie is not useful to understand Alzheimer’s, though it does give a glimpse of a few early signs. However, someone seeing it may remember this as a movie showing Alzheimer’s and may assume that the mild symptoms shown are all that will happen. The movie is typically not listed as a “dementia” movie and the movie is NOT recommended for anyone to get any idea of dementia. Wikipedia page: Listen… Amaya Opens in new window.

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O Kadhal Kanmani (Tamil)

ஓ காதல் கண்மணி (O Kadhal Kanmani) (Tamil), a 2015 romantic movie is about live-in relationships and has had a good reception. A young couple in a live-in relationship stays with an older couple where the wife Bhavani (Leela Samson) has Alzheimer’s. Bhavani’s diagnosis of Alzheimer’s Disease is used to introduce small problems and show how deeply in love the older couple is. The husband is shown as caring and gentle, mainly to support the story’s theme that couples deeply in love can make marriage a success. The dementia problems shown are mainly mild forgetfulness/ confusion, and two episodes of wandering. Dementia depiction is shallow and weird. For example, even after knowing of the Alzheimer’s and after an episode of Bhavani wandering and all the love people have for her, no one thinks she may wander again. They even start looking for her without carrying their phones or her photo to show around. The movie is not useful to understand Alzheimer’s, though it gives a glimpse of a few early signs. It is not useful to get any insight into practical care aspects (other than the need for love and patience). It does not show the progression and seriousness of dementia. The movie is NOT recommended for anyone to get any idea of dementia.. Wikipedia page: O Kadhal Kanmani Opens in new window. [back to top].

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102 Not Out(Hindi)

102 not Out (Hindi), a 2018 movie, stars Amitabh Bachchan and Rishi Kapoor and shows a 102 year old father (Bachchan) and his 75 year old son (Kapoor). The movie is around ageing, positive approaches, and social issues like uncaring children, etc. A two-minute sequence in it is a narration by Bachchan about rapid progression and death of Kapoor’s wife from a “fast growing Alzheimer’s” to illustrate/ reinforce how uncaring Kapoor’s son was. This minuscule narration can be extremely misleading and is utterly unsuitable for laypersons to get any idea of how Alzheimer’s may present itself or get worse with time. In reality, most Alzheimer’s cases take several years to deteriorate. Even the more rapidly progressing forms of Alzheimer’s typically take 2-3 years from initial symptoms to death. The movie is misleading and NOT recommended for anyone to get any idea of Alzheimer’s.

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U, Me aur Hum (Hindi) (warning: depiction is major part of movie and is misleading)

U, Me aur Hum (Hindi), a 2005 love story movie, stars Kajol and Ajay Devgan. Piya (Kajol), when still in her twenties, is shown as forgetting things. Ajay (Ajay Devgan) and Piya fall in love, marry, and have a child. Piya’s episodes of strange behavior keep happening, including episodes of wandering/ other problems. The baby almost dies because of her disorientation. A doctor suggests institutionalization. Decision point. Hubby, after some initial wavering, decides against institutionalization, love conquers all, and problems vanish and we then see Kajol with a grown-up son. Even after several years of dementia, she looks perfectly groomed and very well-aware and coherent. While there are some persons who get Alzheimer’s in their twenties, it is very rare. And again, though most early onset cases develop fast, Kajol is shown as independent, well-groomed, alert, smart and witty even decades after her first symptoms appear. All scenes depicting Kajol’s disorientation and problems happen in the first few years of her dementia and then seem to vanish. The movie shows none of the problems the disease brings in day-to-day life, especially in a nuclear family with a working husband and an infant. It implies that there are no problems once the husband starts showering love. The dementia scenario depicted in the movie is so unlikely that the movie can be extremely misleading. NOT RECOMMENDED AT ALL Romance-craving viewers may think of it as a story of love and hope and miracles, but the movie cannot be used to understand dementia or care, not even early onset dementia. Wikipedia page: U, Me aur Hum Opens in new window.

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Uri, the Surgical Strike(Hindi and other languages)

Uri, the Surgical Strike(Hindi and other languages), (released January 2019) has a minor depiction of dementia (mother of a main character) – her Alzheimer’s is the reason the son (protagonist of the movie) moves to Delhi to be with her. The Alzheimer’s aspect is not explained either medically or in terms of its impact on planning, progression, and so on, and once the son is in Delhi, he takes up the “surgical strike” assignment that allows the movie to progress. There is a brief mention indicating his sister is doing the caregiving. The movie is not suitable to explain dementia to anyone, but its brief depiction of Alzheimer’s is a sensitive portrayal, well acted, and convincing. Wikipedia page at en.wikipedia.org/wiki/Uri:_The_Surgical_Strike

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Others: Malayalam movie, “E” was released in 2017 and its promos mentioned dementia, but by the accounts received so far, it seems to be a plot around some supernatural phenomenon rather than the dementia angle mentioned in promos, and is therefore irrelevant or maybe misleading for understanding dementia.

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Very short movies, usually showing a single episode around dementia persons.

Note that short movies only depict a small slice of the dementia and care situation. It is unrealistic to expect such movies to give any good educational insight, but these short movies could be suitable to get a glimpse, especially if sensitively made.

Yashoda (Tamil).

This is a short movie (24 minutes) that shows an episode where a lady with dementia wanders out in COVID times when the househelp leaves her alone and her husband is unable to come back home because of COVID lockdown. This short movie also includes quite a bit on diagnosis, care and other symptoms, very sensitively done. It has subtitles. See it at YASODHA – Sripriya & Nasser’s artistic thriller tamil shortfilm Opens in new window.

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A Gusty Morning (Assamese)

This is a short movie (21 minutes) that shows an episode where the daughter of a mother with dementia is being visited at home by the man she wants to marry. Directed by Jahnu Baruah and starring Seema Biswas and others, it is a sensitive depiction of the stigma/ fear aspect around admitting someone in the family has dementia. It has subtitles. See it at That Gusty Morning | Seema Biswas | Royal Stag Barrel Select Large Short Films Opens in new window.

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Listing of plays around dementia.

This section will be used to include names of plays around dementia that have received godo reviews in press, so that in case they become available, you can consider watching them.

one listing here is a Hindi-Urdu play, Pakistan Aur Alzheimers, that shows a day (through a monologue) in the life of a 90+ man with Alzheimer’s. The play has received good reviews: see A tragic-comic take on the trauma of Partition Opens in new window and BWW Review: PAKISTAN AUR ALZHEIMER’S A Unique Must Watch Opens in new window.

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Pending Review

None.

General note about movies that depict dementia

As can be seen from the above, no movie depicts all aspects of dementia problems, family situations, care approaches, etc. Each movie focuses on some aspects, and may also use some fictional liberties with what can be done/ what is available, etc. So no movie is complete and representative enough to be treated like a documentary. Also, in order to keep the audience engaged and the story line attractive, some aspects tend to be seen more in all movies, and some aspects are rarely depicted. Some observations:

  • Most movies depict the person as being quite young, or at most in the sixties. Actually, dementia can occur at younger ages, but is more typical at older ages.
  • Movies typically avoid a lot of the sordid and tiring aspects of caregiving, such as helping in the whole range of daily activities all day long, every day. They also avoid depicting problems that are awkward, like incontinence, obscene behavior, and extreme aggression. Late stage care and end-of-life decision conflict has, so far, not found place in movies. Even movies that show the person’s death often rush through that phase.
  • Movies usually tend to show either a very mild-mannered person or a very aggressive situation, and the impression of dementia impact that a viewer may carry could vary very widely depending on whether they saw a movie like Mai or a movie like Godhi Banna.

When watching a movie where someone has dementia, keep in mind that howsoever authentic the depiction, it cannot be complete and that the story-writer would have taken some liberties to make the plot interesting and fast-moving. We watch a movie, we connect emotionally and remember more than what we would if we just read some descriptions. For those watching such movies to understand dementia and its impact, it is therefore helpful to know what each movie’s focus is, and which aspects are not part of the movie focus, or are extensions where writers took some liberties with dementia facts to have a more interesting story.

Note that short movies only depict a small slice of the dementia and care situation. It is unrealistic to expect such movies to give any good educational insight, but these short movies could be suitable to get a glimpse, especially if sensitively made.

Note: Some more details for some movies are available in the blog post: Indian Movies Depicting Dementia: Some Comments Opens in new window

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Previous: Books on dementia and careNext: Selected Online Videos

My mother is my top priority now: a daughter describes how she became an informed and empathetic caregiver

Nadira (name changed) is a highly-reputed consultant who has executed sensitive and critical assignments with several well-known multi-national companies. She is now taking a break from professional work and residing in India, caring for her 80+ mother who suffers from Alzheimer’s. In the interview below, Nadira shares how the progression of her mother’s illness reflected in behavior changes, how the family took time registering that these changes were different compared to earlier, more regular difficult behavior displayed by her mother, and how she has now educated herself on the condition and developed the patience, love, and empathy required to care for her mother.[note]

Please share some background information related to your family and situation.

I was the first person in my extended family to leave home at 17 years of age – to study abroad and shape my future. I am the youngest of three children; my sister and brother are much older than me. It always seemed to me like there was a whole generation missing between my parents and I. Because of this, my relationship with them was always fraught with confrontations and rows, especially in my late teens and early twenties.

The relationship with my mother in particular was pretty fractious, probably because we both have very similar personalities; we are both headstrong individuals with quick tempers. Our blow-ups were frequent, harsh and at times even violent, because she seemed to be possessive and always wanted to have her own way.

After I left home for studies, contact with my parents was restricted to short annual visits. My contact with my siblings who were married and lived different parts of the world, was even less.

My parents lived in India by themselves because my siblings and I were settled abroad. Looking back now, I realize that my mother started showing symptoms of dementia around the mid-1990s. Without any knowledge of what he was dealing with, my father took care of my mother until 2001, at which stage my parents moved in with my older sister. Sadly, my father passed away barely 15 months after the move. It was after my father’s passing that my mother’s condition was diagnosed. My sister handled my mother’s care for seven straight years after this diagnosis, and then I took a sabbatical and moved to India with my mother to take care of her so that my sister could get a well-deserved break.

Please describe the initial symptoms that your mother showed.

My mother began to act strangely around the mid-1990s, and this became more pronounced over the years. Some examples of such behavior:

  • Frequent episodes of forgetting things, like leaving milk on the stove till it burnt, or repeatedly opening the same container to check what was in it;
  • Lost interest in cooking;
  • Lost interest in dressing smartly (she was always immaculately dressed);
  • Repeatedly asking the same question in quick succession;
  • Very suspicious of my father’s motives and behavior;
  • Frequent outbursts of anger to the point of nastiness.

How did the family respond to such behavior?

As my siblings and I had all settled abroad, my father was our mother’s the primary caregiver. Our visits to India were infrequent, and during our phone conversations he rarely shared his difficulties with us. It was only on our short visits that we experienced his situation first hand.

I think my father sensed that something was not quite right with my mother, although he never regarded it as a medical problem. He was extraordinarily patient with her, particularly in the later years, and was very concerned about who would care for her after his death.

In the earlier years, he would sometimes tell me, “She is very difficult now” or “Please find me somewhere else to live; I want to live separately”. I didn’t realise that this may have been said out of a feeling of exhaustion or frustration in taking care of her. Instead I wondered if it was a sign of the marriage breaking up. In hindsight, however, I know that the marriage became stronger and they needed and loved each other more in their twilight years. In fact, my mother became increasingly dependent on my father and would do nothing without him, and he, in turn, was tender and compassionate in his care of her.

In those years, my visits home would start off well for a couple of days before the terrible rows started. My mother would be very possessive and hated my going out to visit other family and friends. I had no understanding of her situation and became extremely frustrated with her behavior. Our rows were very nasty and often ended up with a bitter, hurtful exchange of words and sometimes even physical violence. Often I would pack up my bags and leave to stay someplace else. She would then soon seek me out to where I was staying and apologize saying “Please forgive me, I know I was not nice to you, but I can’t remember what happened; please come back home.” I went back sometimes, but often didn’t because I assumed her behavior was just her usual ‘nonsense’.

My sister related similar hurtful experiences on her vacations in India, with fights that made her pack up and leave the house, taking her young children along, to stay elsewhere instead.

Throughout this period my sister and I saw our mother’s behavior as gradual worsening of the sort of person she’d always been. It never occurred to us that something may be medically wrong with her.

What happened when your father’s health starting failing?

Only when he turned 90 did my father allow himself to admit that he was unable to handle my mother’s care alone. He agreed to move out of India to live with my sister. My sister became their sole caregiver from then onwards. Just over a year after the move, he suffered a massive stroke that left him completely incapacitated and bedridden. As he grew frailer by the day, my sister and I were concerned that, perhaps worry about our mother’s care after he was gone may be ‘holding him back’. One morning when nursing my father, my sister assured him that he need not worry about mother and that we would take good care of her and that he could ‘move on’ if that concern was holding him back. Our mother overheard this, and interpreted it to mean that we didn’t want him to live and in effect were “murdering” him, and she became uncommonly agitated and accusing. We felt terribly hurt by her words and accusations.

Your sister was the primary caregiver for seven years. Could you share data from this period of your mother’s care?

After my father’s death, my mother insisted on coming back to India and it was then that we first had her examined by specialists. She was diagnosed with ‘senile dementia’ and I recall the doctor telling us then that it was not reversible and that we should make arrangements for proper round-the-clock care for her. At this stage my mother was adamant about living in India, even if it meant living on her own. As a family we thought it would be therapeutic for her to be in familiar surroundings in the aftermath of my father’s death, so we went along with it for a few weeks.

My sister and I took turns in caring for our mother for a few weeks at a time. This was one of the toughest periods in caring for her. Being in familiar surrounding didn’t seem to help. She got increasingly agitated by the day. Everything seemed different from what she remembered it to be or wanted it to be. She would get very angry and even throw me out of the house. I would often sit on the pavement, late at night waiting for her to calm down and let me in again. We were all grieving for our father in different ways, but I could not empathize with her behavior, and it literally drove me away. I was unable to take care of her even for a few weeks because of her ‘irrational’ behavior. Thereafter the responsibility for my mother’s care reverted completely to my sister.

After a couple of days of living alone in our hometown in India (with hired help) my mother realised that she could not live on her own and was moved temporarily to a relative’s place until my sister could make the required visa and travel arrangements for her to move out of India and back to her home. The nature of my work at that time involved a lot of travel, often at short notice. I worked long hours, and lived in hotels and serviced apartments. There was no possibility of my taking my mother with me and giving her the care she needed, even if she agreed to let me care for her. I did, however, take on all the financial responsibility as my contribution towards her care.

My sister had a demanding job and her children were still in junior school when she took on the care of my mother. She juggled all of these, set aside her own differences and conflict with our mother, accepted my mother’s condition as a fact, and took care of her for seven years.

For the first couple of years after my father’s death, I avoided visiting my mother. This was because both my sister and I felt that my presence aggravated my mother’s symptoms, possibly due to our past strained and fractious relationship. My mother seemed to tense up just on seeing me. So for those first few years, my sister handled the actual care of my mother alone. These were also the most difficult years in terms of my mother’s strange behavior. There were incidents when my mother wandered off because she wanted to “go back home.” She also became progressively incontinent but refused to admit it. She refused to bathe or clean herself, and threw tantrums to eat. It was exhausting for my sister and the home help to trail my mother and clean after her and keep the home from smelling unpleasant. My sister always had to be on the guard in case my mother wandered off.

After around three years of my father’s death, within a short period of three months, my mother suddenly deteriorated physically in a very visible manner. She lost weight, started having problems walking and developed a shuffling gait. My mother had been prescribed anti-psychotics but my sister gradually discontinued them as she felt that they were not helping.

I finally visited my sister around that time, and was shocked to see the state of my mother. She looked incredibly small and shrunken and was barely mobile. At this time the behavioral symptoms she displayed included:

  • Depression
  • Suspicion and delusions
  • Increased bouts of sleep, especially in the daytime
  • Poor appetite
  • Very poor short-term memory
  • Hallucinations, especially at night
  • No inclination to communicate
  • Unable to distinguish between reality and TV
  • Generally helpless

It became obvious to me then that caring for my mother was a very strenuous task. While I could not afford to stop working, I decided to commit to going over to my sister’s home at regular intervals and take over our mother’s care so that my sister could get a break. It was the first time in years, during this visit, that my mother and I did not have a row, and this helped me make the decision to take a more active role in my mother’s care. I also began to read up, research and understand the illness afflicting my mother.

Although my mother’s care was very challenging at times and she was becoming increasingly dependent on hands-on care, she also exhibited spells of lucidity and tender moments. I remember once, I noticed that her toenails needed trimming. I sat her down on the stairs and began cutting her nails, when she started crying and said “I can’t believe that I’ve reached this stage and that you have to do this for me. I used to do this for you not so long ago.” I found myself crying along with her and reassuring her that it was her time to be pampered.

Can you describe the next phase of caregiving?

After seven years of continuous caregiving, my sister finally said she needed a longer break. As it happened, I had just completed some very intense and stressful assignments and was planning to do something different for a while, and so I agreed to look after our mother in India for a few weeks to give my sister vacation time.

Those few weeks in India were an eye-opener for me. My mother seemed to be so much happier. Friends and family were dropping in to see her after many years; she struggled with remembering names but she knew most faces. She revelled in her new surroundings, loved the attention she got, and the fuss I made 24/7! The thought of making her go back to live with my sister, in a country and environment where her life was very different, seemed unfair at this stage of her life.

So my siblings and I discussed other possible care giving options. We decided to keep our mother static in our home town in India, and agreed that we would take turns to come down here to care for her. I thus set up a home that would be comfortable for caregiving, and large enough for all of us to have our own space. We also agreed that the bulk of the caregiving would be taken up by my brother as he had now retired and had fewer responsibilities. I redesigned my professional commitments so that I could get enough breaks to come to India and take over care whenever my brother needed to get back to his home country for a few weeks to manage his affairs.

This situation obviously led to terrible strife among us siblings, and was made worse by poor communication between us.

Unfortunately, after a few months my brother found he could not cope with the changes that this arrangement entailed. He changed his mind about his commitment. This meant I had to turn down a new assignment and return to India to again take charge of my mother’s care. My siblings suggested that we place my mother in an institution, but this was not an option for me. This situation obviously led to terrible strife among us siblings, and was made worse by poor communication between us.

In the last year, since I took charge of my mother’s care, I have educated myself further on dementia and caregiving. I have benefited from caregiver Support Group Meetings and have had the time to think of ways in which I can be more productive in the area of caregiving.

Please share how you got your mother diagnosed and how the family responded to it.

In the early years my father knew that something was amiss ‘mentally’ with my mother but did not consider getting medical help as he assumed it was related to aging. However, he was quick in getting medical attention if it had something to do with her physical well-being.

Although we had our mother examined just after my father’s death, and we were told that there were ‘multi infarct lesions on the right side of her brain’, and that she had dementia, neither my sister nor I took the trouble of finding out more about this illness at that time. We just accepted it as a fact and cared for her to the best of our abilities. Seeking specialised medical attention or research on what could be done for her, did not occur to us for reasons I still don’t understand.

It was only when I took charge of my mother’s care again, seven years after the initial tests, that I took her for a proper check-up and diagnosis. We didn’t even have the original MRI and other medical records from previous tests to compare the changes that had taken place in the intervening years.

We are all highly educated in our family, intelligent, articulate and have very successful careers. There are enough books on the topics and information is so easily available on the internet. And yet, we didn’t bother to educate ourselves on our mother’s illness.

I often wonder why it took us so long to realize the consequences of her medical condition and why we did not research to see how best to provide effective care. We are all highly educated in our family, intelligent, articulate and have very successful careers. There are enough books on the topics and information is so easily available on the internet. And yet, we didn’t bother to educate ourselves on our mother’s illness.

Were we so caught up in our own lives that we neglected the fact that she suffered an illness and was not ‘just getting old’? All three of us lead very busy lives of our own in different parts of the world. Speaking for myself, it is possible that I did not want to face the fact that there was a problem that needed to be dealt with, thinking it would interfere in my life and add to the stress of my own high-profile career. And I have this ‘incredible’ ability to shut things out of my mind when I want to.

Or it may have been that the reason for our inability or unwillingness to see this as a medical condition was our impression that her behavior was a continuation of old characteristics, which were getting worse with age. But could it possibly be that we were in denial and not wanting to face up to the consequences of her medical condition? After all, our aunt (our mother’s older sister) had died of dementia. She had even wandered off from home and remained missing for almost two weeks, a very traumatic time for all of us.

Or perhaps was caused by a combination of all of the above factors.

Whatever it was, although our mother was being cared for to the best of our abilities, we were slow off the mark in caring for her in an informed manner. That’s for sure.

Please tell us about your family history of dementia.

My aunt died of dementia well over a decade ago. I had seen her once in the early stages when she showed symptoms such as repeatedly asking the same question. Another instance comes to mind when she had come down to visit my mother and stay for a while. No sooner had her son left after dropping her off, she became insistent that she had to go back immediately although the plan was that she’d stay the week. The ruckus she caused did not leave my parents any option but to take her back immediately. The family would not talk of the problem except implying that “something was not right in her head”. Then, there was the incident of wandering I just mentioned earlier, when my aunt walked out of her home and was found in a pathetic state almost two weeks after she had gone missing. Even after this incident, no one talked about her medical condition. Next I remember being told that she was bed-ridden, and then that she’d passed away.

At a recent family gathering of my cousins when discussing my mother’s health, we realised there could have been other elders in the family who probably had dementia. We recalled family anecdotes narrated to us by our respective parents that indicated that our grandmother exhibited extreme forgetfulness (such as being unable to recognize even close relatives) and other typical dementia symptoms. However, no one had linked these stories together earlier on to realize that dementia could be running in the family.

Our recent awakening, though, has had some benefit. My uncle (my mother’s younger brother) who is around 80 years old and had been showing dementia symptoms for some years has been diagnosed recently, when he is still in a relatively early stage.

Given the family history, my sister and I are aware of the possibility of our developing dementia later in life. This is something we need to think about, and plan for, more seriously in the near future.

But even now, not all of us in the family understand dementia and how it affects behavior. My brother, for example, still feels that my mother’s current behavior is no different from what she showed fifty years ago–this is in spite of the fact that I have shared with him all my research on dementia.

You have recently consulted doctors for your mother. What is her current state, and what do doctors advise?

My mother is currently wheelchair bound, and can only walk very short distances (like room to toilet) and only if supported. She is also incontinent. She is confused with languages, often speaking in one when she thinks she is speaking another. All her personal hygiene needs have to be taken care of by others.

However, she is still able to talk sensibly at times and has moments of lucidity, when she can recognize faces. On a good day we can play games, listen to music and sing along or read the newspapers (although she ends up reading the same line repeatedly!). She can still do some mental arithmetic and even tries to cheat when we play games :-). She eats well and loves her food.

My mother has always had mood swings. Every few weeks she has an episode of extreme agitation, often also showing delusions and hallucinations. Then, for some weeks, she is much calmer, even slipping into a depressive state where she cries and says despondent things like, “Why am I alive?”

We have seen this for years, but had never thought of investigating it or consulting doctors for it. After talking to doctors now, I realise that these mood-swings may not be because of dementia, but could be due to some form of clinical depression, and may be treatable.

We have seen this for years, but had never thought of investigating it or consulting doctors for it. After talking to doctors now, I realise that these mood-swings may not be because of dementia, but could be due to some form of clinical depression, and may be treatable. I am consulting doctors to see a way forward, because managing the mood swings would greatly improve my mother’s quality of life.

What is the current care arrangement for your mother?

Currently, I am the primary caregiver. I have a paid attendant who attends to my mother’s food and hygiene. My mother has grown very fond of this girl. We never leave my mother alone in the apartment; if I need to go out, I do so only when the attendant is at home to keep an eye on my mother.

My mother has her own room and bathroom. The bed she sleeps on is very low so that she does not hurt herself in case she falls. There is protection on the floor in case she does fall. The bathroom has side rails to help her sit up straight; the toilet seat is padded for her comfort. The tiles were replaced to make them anti-skid. I have a large mirror in her room – this helps her to reorient herself, especially when she wakes up in the morning, to who she is and how old she is. There are a few pictures of the family in the room. At times these pictures have a negative effect so they are placed in a way that she can’t see them all the time.

As my mother spends a large portion of the day in bed, I have had an air mattress installed to prevent bed sores. I also use incontinence under-pads on the bed at night to minimize soiling of sheets and mattresses. Also used are incontinence “pants” instead of diapers as these are easier to put on. Besides, because they are pull-ups my mother assumes they are normal knickers. I used to import both the under-pads and pull-ups from overseas, but have now managed to source these in India. I have a supplier who delivers my monthly supplies to my home.

The most time consuming part of my mother’s care is bathing and getting her cleaned up every day. On good days we might spend about ½ an hour. On difficult days this could stretch to an hour or more. But once she is up, my mother is not very difficult to handle. She has a healthy appetite and eats two meals a day. Most often she manages to feed herself. She is not dextrous enough to eat with a spoon, so often she uses her fingers, which means we have to pay particular attention to hygiene. Wearing diapers can make one’s skin itchy and she scratches herself at night. So we make sure we wash her hands thoroughly and always keep her nails short.

Her diet is managed carefully to ensure that she does not suffer from bowel problems – she is given at least two kinds of fruit every day. She loves chocolates but this is rationed and given to her after a meal and any time before 5.00 pm. If she eats any sweets, especially chocolates in the evenings, it tends to keep her awake at night, so I avoid this as much as I can. Sometimes when she does not feel like having a second meal, she is given a glass of Ensure as a meal replacement.

Music works like magic most times to keep her occupied, calm and/or to de-stress her. She often sings along if she recognizes the song. When she occasionally asks after my siblings and she is in the right frame of mind we talk on Skype which she really enjoys. She thinks they are in the room with her! She can also occasionally converse on the telephone, but this is very rare. On a good day she enjoys having visitors and listening in to conversations even if she does not participate in them.

How has this past year of caregiving affected you?

It has changed me in more ways than I thought possible.

I was always a very driven person, impatient to get on with what needed to be done, and short-tempered with people – a very hard nut to crack. Caregiving has made me discover a huge fund of patience within myself that I never knew existed! I have found myself capable of far more love and empathy than I thought I had.

For almost a year now, I have spent the bulk of my time caring for my mother, with my professional life on standby. While I have a small social circle of old school friends and extended family, and I am regular at the gym, I am living a very different life from what I was used to. For someone who worked 16 hour days 6 days a week and was on call 24/7. I now have a lot more time for myself to pursue other interests. I used to spend a lot of time travelling earlier; now I am losing air miles for not using them before they expire! The phone is more or less silent and there are only a few emails that need my urgent attention.

Yet, I can categorically say that I would not have it any other way. I am happy with what I am doing, and find the time I spend with my mother enriching.

What are your plans for the future?

My current focus is on getting my mother as stable as possible, and using medical advice for components of her condition that are treatable. I have also set up a good, suitable environment of care.

My mother has a past history of “abandonment” and I would like her to always have a family member living with her. Hence, I am not considering placing her in a long-term stay facility as an option–I suspect placing her in such a facility would make her feel abandoned and therefore pull her down.

Once my mother is happier and better settled, I hope to work out an arrangement with my sister to take turns for care. I can then sign up for professional assignments for the months when my sister is handling care. The decision I take will be determined by my mother’s care situation, whether I do it myself or share it with my sister. My mother is my top priority right now.

Thank you for this detailed and frank interview, Nadira!

[This is part of the caregiver interviews on this site. View the list of all caregiver interviews]

Note: This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of dementia patients, the families, the care environment, or professionals. Every patient, every family is different and so is their experience. Some names and details have been changed to protect the identity of the interviewee.

Keeping persons with dementia peaceful and improving their quality of life: practical tips from a nurse

Sheila is a registered nurse who has worked in Aged Care assisted living facilities (long-term stay homes for elders). She is currently working in an acute hospital where caring for patients with dementia is an everyday occurrence. She has interacted extensively with several dementia patients as part of her professional work. In this interview, she uses her professional experiences to share tips that can be used by family caregivers looking after persons with dementia in a home setting. [note]

As someone who has been working with patients with dementia, you must have often encountered upset and agitated patients. Can you describe a couple of such experiences and how you and your colleagues resolved them?

In my experience, when persons with dementia are admitted to a hospital for an acute medical condition, it is not uncommon for them to occasionally become agitated. This also happens in “aged care” facilities, where patients have moved in for long-term assisted living care. Sometimes this agitation is related to simple things like the patient not being able to find the toilet. Sometimes they know that they are not at their usual place, and hence have a desire to leave.

..a woman with dementia may be living with her husband, but her mind is back in another time/in another house/ with her mum and dad. Persons with dementia don’t have the ability to reason that they are not children any more, and they do not know the difference between past and present, because the area in the brain that handles higher functioning has been damaged and lost

Also, such agitation can happen even to patients living at home, and such a desire to “go home” (even though they are already at home) may be related to their mind being in a different chronological time in their history. For example, a woman with dementia may be living with her husband, but her mind is back in another time/in another house/ with her mum and dad. Persons with dementia don’t have the ability to reason that they are not children any more, and they do not know the difference between past and present, because the area in the brain that handles higher functioning has been damaged and lost.

In hospitals, patients often have to share a room with other patients, and they may not like the people they share the room with, or others may come and invade their space or touch their things etc. There are many challenges of managing patients with dementia in a group setting. There is a lot of activity because of people coming and going, and conversations happening around them, which their mind is trying to make sense of and often interweaving into their own thoughts. In “aged care facilities”, where we strive to create a home away from home, persons with dementia may share a room with one other person for company or have a room on their own, which is a lot nicer for the patient.

In both “aged care” facilities and hospitals, we try to keep the environment quieter and calmer to reduce episodes of agitation. We are better at creating a calm environment at “aged care” facilities, than we are in hospital where there is always a lot happening because the medical problems being treated require constant attention and action.

It really would be ideal to try and resolve health issues of patients in their own familiar surroundings with their own doctor who has a relationship with them. Home care, therefore, is preferable if the family can handle it. This is not always possible, and if patients do need admission to a hospital for some medical problem, then it is often best if the family members can spend a lot of time visiting, and during the visit, take their loved one away from the room to a quieter area for a spell.

When a patient gets agitated, the nurses try to assess the cause of the agitation. Do the patients need to go to the toilet? Do they need to have a drink or a snack? Has someone annoyed them? Is there too much activity or noise that is causing it the patient’s agitation? Is it related to memories, for example, they feel they have to get to work, or go do the shopping, or go home? Are they in pain– a simple headache may lead to agitated behavior.

Once the cause is established and the patient’s basic comfort needs have been met, then if the agitation persists, we try to use distraction techniques.

We try general soothing conversation using a calm tone, low pitch and slower pace. We point out pictures in a mag or in photo albums and elicit conversation. We may ask simple questions requiring simple answers like ‘yes’ or ‘no’. We can elaborate and suggest a response, just to keep the conversation going, and we also take the stress out of them struggling to find an appropriate answer. We might make them a cup of tea and sit with them for a chat. We might get them singing or play some olden-days cheerful but gentle songs. We play simple children’s games with them, give them something to cuddle or just hold their hand stroking it gently. We might get their loved ones on the telephone to speak with them — this often helps to calm them down– the promise of a visit ‘later’. We might take them for a gentle slow paced walk away from their area.

If simple measures don’t work, we may use medication.

If patients are aggressive, we might just leave them alone in a safe environment and observe them from a distance. With time sometimes, the aggression may resolve. We may get another staff member to approach them, as sometimes for a while you become the ‘bad guy’ or the cause of their frustration.

Note that, to be effective while helping a patient, we need to know enough about them. Persons with dementia might not be able to tell us what their age is or what their profession used to be, or what their family members’ names are. To be able to care for them in an “aged care” or hospital setting, it helps enormously to have some background information when interacting with patients with dementia. This helps us manage their agitation better. Fortunately for home caregivers, they typically know enough about the patient.

Each case is different and the challenges faced by the carers depend on what area of the brain is affected and what ability is lost.

One important thing I’d like to emphasize is that we have to separate the person from the disease, so that we don’t lose sight of them as individuals. Each case is different and the challenges faced by the carers depend on what area of the brain is affected and what ability is lost.

Can you share some tips about possible triggers?

Some triggers for agitation may be needing to go to the toilet, can’t find the toilet, needing a drink or food, too much noise, pain/headache, something on T.V. if that is playing in the background, the tone of our voice, reacting to our impatience, feeling cold/or hot,.

The time of the day can be a trigger, often at sunset (this is called ‘sundowners syndrome’) probably because in the past they had to get things ready for the family coming home, or had to get home by a certain time. Sundowning is managed best by medication, as they remain agitated till it gets dark.

Sometimes agitation is just related to memories that come up– ‘got to go to the bank’, ‘got to go to the shops’, ‘got to get the car fixed’, ‘got to get the crop harvested’ etc.

Another trigger may be related to pain, or being constipated, or if the symptoms have worsened over a few days it may be related to a urine infection or other health problems.

Sometimes, patients get into a sort of “loop” where they keep repeating a demand or remain stuck into an emotional pattern even when the “trigger” is resolved. What do you suggest?

If the behavior is repetitive questions, first establish that they don’t need to go out to the toilet or need a drink or are free from pain. If it still persists, then you don’t have to become frustrated by feeling that you have to answer every time; it is just a behavior, develop a bit of a deaf ear. Involve them in some meaningful activity.

They may be acting repetitive because they are bored. If you are getting a meal ready, then give them a simple chore like peeling vegetables or shelling peas or setting the table(unbreakable dishes are a good idea, like thalis).

As a last resort, medication might be an option.

Can you give some examples of changes we can make in our homes to reduce the chances of patients getting agitated, or wandering out, or harming themselves?

Keep the temperature comfortable.

A dark mat (black or dark brown) at the front door often works to turn them back, because they can’t make out if it is a hole on the floor, or how to cross it.

Reduce the auditory and sensory stimulation. For example, don’t have the T.V. blaring loudly in the background, or have them in a room where children are running around fighting or playing noisily. Keep the environment calm, with adequate but not glaring lighting. The T.V. news is often distressing as it usually contains unpleasant, anxiety-producing negative content about wars or thieves etc. Nature shows or travel documentaries or children’s shows are often good distraction for a short while.

A dark mat (black or dark brown) at the front door often works to turn them back, because they can’t make out if it is a hole on the floor, or how to cross it.

A simple picture of a male/female and a toilet on the door of the toilet helps them locate the toilet if that is a problem.

You can also make some changes in the home to make it an uncluttered, safe environment, such as remove loose rugs/mats that they might trip or slip on.

Can you suggest ways to keep patients engaged and active when we are busy with household chores and not able to sit down with patients for games or other activities? Are there any activities that do not require continuous supervision, and would not frustrate them if they are alone?

You generally can’t leave them alone for long unless they were accustomed to spending large amounts of time on their own listening to music or reading.

One good and simple idea is to have a rummage box, a bit like your grandmother’s sewing box, full of interesting bits of fabric, spools of thread, buttons, lace, and add other interesting things like colorful balls, small bells, costume jewellery etc. For men, you can have a box of nuts and bolts, small spanners, bits of wood, scraps of fabric etc.

Start them off picking up items and putting them on a table in front of them. Suggest they sort out the box or tidy up. Once they empty it out, they will often pack it up again— a few minutes of time is bought.

Instead of using a rummage box, we sometimes make a ‘fiddle mat’, which is easier to handle, and takes less space to play with. A fiddle mat is a small fabric place-mat to which we attach objects of the sort we may have kept in a rummage box. For example, we stitch on things like zippers, ribbon tied in a bow (which they can undo and fiddle with), colorful buttons, bells, pieces of fabric, things from their past that hold memories like bobbins( thread reels), bits of knitting or crochet etc. Patients often spend hours trying to get the objects off the mat or trying to ‘fix’ it. Such a mat would be simple to make at home, too.

fiddle mats for dementia patients
Photograph of some fiddle mats. Courtesy: Sheila

Some people with dementia often rummage through drawers. They will pull out all their clothes and pack them away in bags as if getting ready to leave. You can have drawers they can rummage through without upsetting you, and just put everything back when they’ve lost interest later. Try not to scold them, or it will backfire on you and just make them agitated. I’d suggest you keep their everyday clothes in another area, and just let them have items in their drawers that won’t upset you if they mess it all up.

In the “aged care” or hospital setting, nurses will often take the patients with them when they are doing routine tasks like restocking cupboards etc. While the nurses are tackling the tasks, they give the patients something simple to hold or ask them for help with tasks like folding cloths.

You can do things like that at home, too. If you are doing laundry, have them sitting nearby (like you would have done with your kids or grandkids) and give them pegs to fiddle with or some folding of simple items. Again, don’t expect a task to be completed as they often lose their train of thought and can’t concentrate for long periods. Remember that you are giving them something to do to keep them occupied and happy while you are doing your own work; you are not giving them the task in order to get it completed perfectly.

If they are strong on their feet they can help you carry items and walk along with you.

Everyone wants to be useful. It would be pretty scary especially in the early stages of dementia to be aware that you were losing your mind and not being able to recognize everyday items and people.

Caregivers would love to spend quality time with the patients, but don’t always know how to. What sort of joint games/ activities have you found patients enjoying with their caregivers?

Some activities you could try:

Armchair exercises: Stand/sit in front of your loved one and ask them to mimic your exercises. Raise your arms over your head, then lower them out to the side. Raise your arms above your head, then touch your shoulders with your fingertips. Bend your head from one side to the other, up and down, side to side etc. raise your legs out in front, then back down. Rotate your ankles, and so on– you get the picture. Make up your own routine and keep it simple.

If they liked to paint when they were young, get some poster paints/crayons or colored pencils and a scrap book or children’s’ coloring in books. Even if they were never too interested in painting, they will often participate and produce meaningful pictures.

Look through photo albums, talking about the people and places.

Make scrapbooks of comforting pictures. Patients can help cut out pictures and glue them down. When made up, these scrapbooks are good to look at and chat about. Fill the scrapbooks with large pictures of flowers, or scenery or animals and birds, or even household items or festivals. You can glue pieces of fabric down– choose colorful patterns or fabrics with texture that they can touch and feel.

In our “aged care” setting and in hospitals, our patients often like walking around the corridors looking at the pictures on the walls, pictures of sceneries and birds, or framed embroidery or tapestry. We always stop and reflect on the picture and have a gentle conversation about it.

If you take them for a drive, go somewhere not too stimulating. Avoid noisy shops, etc. A peaceful park would be a good option. Large family gatherings can be overwhelming after the first few hugs.

Watching happy old movies may be okay. They might fall asleep during it or walk away. Just be guided by what mood they are in.

If you take them for a drive, go somewhere not too stimulating. Avoid noisy shops, etc. A peaceful park would be a good option. Large family gatherings can be overwhelming after the first few hugs.

A soft toy or baby doll might be of comfort, especially to the ladies.

Stroking pets (if they are fond of pets) is comforting. You can always get friends to bring a calm pet over.

Asking family or friends to telephone or visit one at a time, also breaks up the day.

How can we know which activity to try out, and when? How much activity is good, and when does it become over-stimulation?

Do activities when they are at their best/ most alert.

Think of how you would entertain a toddler at home. Similarly, the attention span of persons with dementia is limited and their ability is often limited, so keep games simple. Matching cards/pictures. playing snakes and ladders, try any children’s’ games and see what they are able to do. You will know they’ve had enough if they become restless or fall asleep.

Intersperse activities with walks. Walking in the garden is good. Point out flowers and trees on the way. Keep an easy social chitchat going even if they don’t reply. Ask simple questions on and off, and answer your own question if they’re having trouble answering.

It is better to have a daily routine. Get up around the same time, eat around the same time, and so on. Just swap the activities around every now and then.

Are there any other observations you would like to share?

I would suggest family carers try and get some time out for themselves every day just to go for a walk, or have coffee with a friend, or just do the shopping.

Friends are often willing to sit with your loved ones and read to them or talk with them, if they know what to do and what to say. If you are feeling stressed (just like you did when looking after your children when they were young), ask friends for help or time out. It is not dissimilar to minding a young child– just make sure they get to know your friend before you leave them alone with them.

It is not selfish to have time for yourself or admit you are feeling frustrated and stressed. You will feel a lot more loving if you can have some ‘me time’.

Your roles have swapped completely, and instead of having that parent you looked up to for advice, you now have a little child in an adult’s body. Some family members describe it as “living with a stranger”. If you are caring for your spouse, your husband or wife no longer recognizes you. It is recognized that carers go through a grieving process as the person they knew disappears for ever.

Go easy on yourselves. You are doing a wonderful service. Take time out so you can last the distance and feel good about yourself.

Thank you for this very informative set of tips, Sheila!

[This is part of the expert interviews on this site. View the list of all interviews of health care professionals and volunteers]
Note: This is an interview of an expert/ volunteer. The views expressed and the suggestions given are those of the interviewed person, and not a recommendation being made by Dementia Care Notes. Suitability and applicability of the suggestions remain the responsibility of the reader. For professional advice suitable for your situation, please consult an appropriate professional.

Father thought I wanted to kill him: a daughter talks of her father’s dementia

Nayantara (name changed) is in her forties, and lives with her parents because her father has dementia and her mother needs help in his care. Unfortunately, though her father has been showing strange behavior for years, and has been diagnosed with dementia, family members (his relatives and his wife) refuse to accept the diagnosis and insist that he is normal. When Nayantara tries to explain the problem, they accuse her of exaggerating, and sometimes even doubt her motives. They also accuse her of not taking care of her father, though they are not really willing to help. [note]

In this interview, Nayantara describes the situation and talks of the strange ways in which her father acts, and how she copes with the stress.

Could you give us some background information first?

Father comes from a poor family. He has a physical deformity because of which his parents neglected him and were unwilling to pay for his education. Being a brilliant student, he funded his studies by taking tuitions for younger children. His childhood problems, however, left him an insecure person, prone to anger.

All those years we just thought he was a difficult man to live with.

Father’s strange behavior is something my sister and I have seen for many years, such as episodes of disproportionate anger and walking out of the house. My mother always considered them normal, and as they increased, we did not really think there was a problem and did not consult a doctor about them. All those years we just thought he was a difficult man to live with.

When I finally approached a psychiatrist because of some more problems we faced, the psychiatrist conducted tests on Father and gave the diagnosis of dementia. He told me that the dementia had probably been growing over the years and may have been the reason for the troublesome behavior earlier.

The diagnosis happened about three years ago, and Father has been getting worse in spite of the best care we are able to give. Earlier, he would walk a lot and talk to people; now he has withdrawn completely. Unfortunately, no one in the family believes the diagnosis and they treat him as a normal person and expect him to behave as one. This puts stress on him, because he is not able to remember the incidents they mention, and gets even more agitated. Once, for a period of a few weeks, he was convinced that I was trying to kill him–that was particularly traumatic for me, because people believed his accusations.

Currently, we have employed a full-time attendant so that he gets the attention he wants. He is relatively stable and withdrawn, and seems okay most of the time, but I am finding it a problem to balance caring for him and working to earn money to pay for the expenses we incur.

You mentioned earlier episodes of strange behavior, prior to the diagnosis. Could you describe them?

Often, Father would get angry for trivial reasons. For example, if guests/ relatives had come over, he felt he was not getting attention the way he should, and would get furious. If someone else was served water first, he claimed he was being mistreated or neglected. In that mood, he would throw things (bottles, plates, whatever he could) or refuse to eat food.

He also started walking out of the house in anger. He would not come back on his own, and my sister and I would have to go around looking for him. Usually, he would always head for the park near our house, perhaps to make sure that we would find him and bring him back.

These episodes would upset everyone, and we would get angry at him after bringing him back, and he would yell back, and the whole mutual screaming would continue for two to four days before it subsided.

Sometimes, instead of getting angry and throwing a tantrum, Father would react to his perceived neglect by withdrawing totally and not talking to anyone.

Most of these episodes were related to there being a crowd in the house, such as for a family gathering or function.

All through these, my mother and others behaved as if this was normal behavior, and my sister and I also assumed this to be so.

What made you consult a psychiatrist?

Around three years ago, Father changed in many visible ways. One was that he became obviously weaker physically. He used to be so fond of long walks, but now he started spending hours at home, just sitting and looking at the wall. Though he had always been an introvert, his talking reduced to a level that was alarmingly low.

He also became very suspicious of everyone and everything, and talked as if everyone was conspiring to hurt him or rob him.

I felt this was not normal, and decided to consult a psychiatrist.

How did getting a diagnosis change things?

The main change was that I understood he had a problem and would not get so upset when he was angry or behaved in inconvenient ways.

Unfortunately, my mother and the rest of the family do not believe the diagnosis.

What does your mother say about his behavior if she does not accept the diagnosis? When he accuses you of mistreating him, does she believe his accusations?

My mother thinks Father is normal, and that all his behavior has been, and continues to be normal. She says his walking out of the house and not returning till we located him and brought him back, was normal. She believes he is still normal.

She does not believe his accusations, but has never stood up for me or defended me with him or with my aunts when he has accused me. Father always suppressed her, not allowing her to go out of the house or talk to people, and she has never developed the confidence of tackling him, so she does not know how to react to such accusations.

Can you describe the incident where your father thought you were trying to get him murdered?

That was awful.

…my father became convinced that I had hired someone to kill him

I don’t know what prompted it, but my father became convinced that I had hired someone to kill him. He thought I was after his money. He told my mother; she did not believe him, but didn’t know what to say to him. He then called up his sisters in Hyderabad and they rushed over to Bangalore the very next day. He told them to go to the police immediately because his life was in danger.

My aunts began to scold me. They did not go to the police but started telling me that what I was doing was wrong and that I should not do such a wrong thing. They told me to transfer his money to their names and said that once I did that, they would look after him.

I felt very hurt, but I tried to stay in control, and told them that he was confused and not normal. They did not believe me, and kept saying I was cooking things up. I asked them to wait for a day or so and watch his behavior before deciding.

By evening, Father had started acting vague, and my aunts said that maybe there was a problem with him. I asked them to stay for another day to observe him but they said they had families to look after, and left that very evening.

I felt very bad that they had believed him and that everyone had gathered to curse me like that. I almost broke down.

But if they thought his life was in danger, wouldn’t they have tried to take him away from home first, instead of ‘scolding’ you? If they believed him even a little, would they gone back and left him here, living with you?

I don’t know why they behaved in that way if they didn’t really believe him. The morning they came, they kept insisting that I transfer all the money to their account so that they can look after him, and when I refused, they seemed to lose interest. Maybe they spoke like that not because they believed him but because they thought he would be easy to look after and they felt he had a lot of money. I don’t know what they really believed or wanted; all I know is they kept saying harsh things to me and I almost broke down.

Did your aunts know of the diagnosis?

Yes, I had told them of the diagnosis, but they claimed I am exaggerating normal problems any old person has just to get his money.

One thing is, Father’s behavior is not uniform. On some days, he seems almost normal. Also, when they visit for a short while, he seems normal, and his strange behavior becomes obvious only if they stay long enough–which they do not. Even if he behaves oddly, they say it is an occasional aberration, not a medical problem.

I have a medical certificate of the psychiatrist who has been attending to Father. When I told my relatives about it, they said I must have influenced or bribed the psychiatrist to give such a certificate and that I was trying to get Father declared mentally unfit to get his money.

I have stopped trying to explain that Father has a medical condition

I have stopped trying to explain that Father has a medical condition or that I have a formal diagnosis for him. What’s the point! Instead of believing me or trying to understand, they only start accusing me of things like wanting to rob Father! They are not willing to help but very quick to criticise.

Are your aunts still in touch with your father? Does he still complain about you to them?

Whenever my aunts talk to Father, he gets agitated because they remind him of something that disturbs him, or that he does not remember. They do not take his mental state into account while talking to him. I have requested them not to talk to him, but they continue to call him up once in a while, and every time they do so, he gets disturbed and becomes difficult to handle.

Has he often shown fear of attack and murder?

There was once a period of one-and-a-half month when Father thought that my mother was trying to kill him and would become very agitated if he saw her. For that entire period, my mother moved to my room and made sure that Father did not see her. As Father was mainly staying in his room all the time, we were able to do this.

Then, there was this phase when he was convinced that something was being stolen from his room every day. He would open and close his cupboard several times (all in the evening, after 6pm) to confirm that everything was still there.

Poisoning is another thing Father was very scared of. Once he stopped drinking milk for several days, claiming it did not taste the way it should and had been poisoned.

His paranoia was so great that for several months, he made it a daily routine that I should touch him and swear that I would not cheat him or kill him. He even insisted that I fall at his feet as part of this daily swearing. He made me write this on stamped paper as a guarantee and kept this paper carefully in his cupboard, as if that was protection.

Are there other strange behavior patterns you’d like to share?

Well, Father acts strange in many ways. Medicines, for example. He will keep acting suspicious of his medicines and say he wants a medicine changed. He refuses to take the old medicine, claiming it is ineffective, or that it will harm him. I therefore have to consult the doctor and get the medicine replaced, typically by another brand for the same medicine.

He seems very insecure in spite of all we do to keep him safe and happy.

Another thing that bothers Father is the thought of death. He is very scared of it, and cannot bear to see any death in any TV serial. He cannot even bear to see someone cry, and makes us put off the TV if there is a scene involving crying. He seems very insecure in spite of all we do to keep him safe and happy.

On some days, if I touch him affectionately, he looks happy. On other days, he reacts to that gesture with surprise and says, why, what’s wrong, am I dying?

Father’s disorientation causes all sorts of problems and it is not always possible to prevent them. For example, he likes to drink hot milk very early in the morning, and so I keep it in a flask. I heat it late at night so that it is still hot when he takes it at his usual time. One day he decided to have it earlier, just after I’d prepared the flask for him, and he poured the milk directly in his mouth instead of using the glass I keep near the flask. The milk was so hot it scalded him, and he spilled it over his body. As a result, he got boils in his mouth and all over his body and it took many weeks for the boils to go because he is a diabetic. We need to be very careful all the time, because he does not know what he is doing.

Sometimes, when I go out, Father feels uncomfortable and wants me back. For this, he complains of things that he knows will make me rush back. A few days ago, for example, I had gone out and I got a call from home that Father was complaining of severe chest pain. Though I suspected this was not so, I could not take any risk, and rushed back. I talked to the doctor, who said that there was a pill he needed to take if he genuinely had pain, but he should not take the pill if there was no pain. I took the pill to him and told him what the doctor had said, and Father just shrugged and said that he didn’t have any pain.

One more thing: Father is very good at hiding things. Because he wants to have money easily available, I have given him a thousand rupees. He keeps this money on him all the time. He even holds it in his hand when he is changing his clothes or having a bath. Sometimes, when he cannot hold it, he hides it in his room, but he always manages to find the money. He may tell the attendant looking after him where he has hidden the money, but he also instructs her not to tell anyone else or the money will get stolen.

Can you share any incident which was heart-warming for you?

Once, my guru was supposed to come home for a visit. I was very tense as I thought Father would complain about me to him, telling him how bad I was, how I did not care for him, spilling out all those complaints as he did when his sisters came.

But when guruji sat down with Father, Father was very mellow. He told guruji that I was looking after him very well, and that I was a very good daughter and that he doesn’t have to worry about anything because I am there with him.

I was totally stunned by Father’s words, and very touched. I felt that, deep down, Father appreciates what I do, and so my effort is worthwhile.

What is your father’s current state?

Father is totally withdrawn now. Once, he would walk several kilometres every day, but now he stays in his room all the time. He does not try to walk out of the house any more; I think he is scared that we will not bring him back.

He also needs help for his normal activities, like bathing and eating. We have got a full-time attendant to help him, and I think that is good because he is very happy that there is someone with him all the time. He keeps telling her to do things–get me water, take the water away, put on the fan, put off the fan, fetch me the kerchief, keep it back, and so on. When he would do it earlier with my mother or me, we found it difficult to handle because we would have to drop whatever we were doing to attend to his demands, but this attendant is employed for just this work, and she is able to do what he wants, and he is happy he is getting the attention he likes to get.

Healthwise, Father also has several other problems. He has gastroparalysis, and is a diabetic and hypertensive. He also has vascular disease and is a cardiac patient. This means that we have to keep taking him for various checkups, and that is a struggle. Because of his dementia, he is often paranoid and wants to change doctors because he starts claiming that the current doctor is trying to poison him.

There are days when the situation depresses Father. In spite of all we are doing to keep him happy, he claims that he wants to die, and threatens to jump out of the window. That hurt me, because we are really doing so much to keep him happy–what else could we do? But he is not happy. We have taken precautions to make sure he cannot jump out of the window, but the fact that he thought about it made me very sad.

How do you and your mother cope with the stress of caregiving?

I am fortunate enough to have a good circle of friends who understand my problems and I can talk to them and meet them. In addition to meeting friends, I love music, and I sing to overcome my stress. I have also found ways to feel more at peace about caregiving now.

My mother, on the other hand, feels neglected and lonely. She gets depressed if I go out of the house, and wants me to stay at home all the time, saying it is my duty to stay with her and not go out. I would earlier listen to her, but then I realised that I cannot pause my life because of this; my life has to go on in parallel.

You mentioned that you are more peaceful about caregiving now. Can you share what has helped you do what you must do?

What has made the greatest difference is my de-personalizing the situation. Earlier, whenever I interacted with him, I thought of him as my father, and of myself as a daughter, and all sort of expectations and disappointments and hurts came in, because I did not want to be accused of all sort of things by my father. I expected affection, and there was none.

Now, before I go in his presence, I remind myself that he is a patient, and that I am like a nurse. That gives me the strength to take any criticism or agitation in my stride.

Father knows that I am more important in his care than others who work for him. When he has a problem, like when he thinks he is unwell, he calls me to tell me about it, though he may not tell my mother or the nurse. He will call me and tell me about his problem, and say I should take him to a doctor otherwise things will get worse. At that time, if my response is not the way he wants it, or if he thinks I am not paying attention or getting agitated, he also gets agitated. Once he gets agitated, he is extremely difficult to handle. Now I am alert about this, and am careful to be attentive and comforting when he voices a concern.

Also, when I feel he is getting agitated about something that I cannot help in, I move away before his agitation increases. He usually does not get so agitated with others, perhaps because he depends more on me. If I move away before his agitation is in full-swing, he forgets about his problem and becomes normal faster.

What are your plans for the future, with respect to caregiving?

Currently, having learnt so much about how to handle him, and also having found an attendant who is satisfactory, I am comfortable with the caregiving arrangement. It gets tiring on some days, and also stressful, especially when I have to rush him to a doctor or call a doctor home because he insists that his medication is wrong, but on most days, I can handle it.

…the care takes up so much time and energy that it becomes difficult to earn enough money

One concern I have is financial. I have to not just support my parents in terms of care and errands and all that, I also have to earn enough to support them financially. But the care takes up so much time and energy that it becomes difficult to earn enough money. I have to sometimes refuse work because I need to be there for my father. Also, I work from home, and cannot always do so when he is not well, or is agitated. As his state becomes worse, I do not know how I will get the time I need to care for him while also earning enough to pay for the care he needs.

Another area of concern is my own life. My parents expect me to make them the centre of their lives. My mother always says it is my duty to always be available at home, and behaves as if going out for even a few hours is some type of neglect of my parents. In the beginning, I would listen to her, but then I realised that I need to have my own life, too. But as the care increases, more and more of my own need for variety and my own “space” is getting affected, and I am not sure how I will balance all these along with earning enough money and also taking care of my parents.

Even so, I plan to take care of them to the best of my ability, as long as I can.

Thank you, Nayantara!

[This is part of the caregiver interviews on this site. View the list of all caregiver interviews]

Note: This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of dementia patients, the families, the care environment, or professionals. Every patient, every family is different and so is their experience. Some names and details have been changed to protect the identity of the interviewee.

His condition affected every sphere of my life: a son talks of his father’s Alzheimer’s

Varun (name changed) is a writer whose father has dementia (Alzheimer’s). For a few years, Varun helped his mother care for his father, but later, his mother decided to move with the father to their hometown because she felt he would be more comfortable there, and care would be simpler with relatives and friends around them. Below,  Varun shares his experiences and thoughts about caregiving. [note]

“Varun”, who gave this interview anonymously in November 2010, continued to ponder and process his caregiver experiences and, increasingly began sharing them with friends and caregivers. He is now open about this aspect of his life, and wishes to give his real name: “Varun” is “Eshwar Sundaresan.” We have retained the interview below as originally published, and have also added, at the bottom of this interview, the link to a blog post he made in September 2013, where he shares his personal growth derived from his experiences with his father’s dementia.

For the period your father was living with you, how did his condition affect your work, leisure, and social life? What sort of adjustments did you need to make to balance your other roles/ aspirations with this responsibility?

His condition affected every sphere of my life.

I don many roles in my professional life – writer, journalist, consultant, and others– and I began staying at home more than usual so that I could handle any emergency that presented itself. I inevitably lost some revenue, but I felt that my mother needed my presence in those first three years. On two occasions, I went overseas on important assignments and I was forever anxious about the home front. My mother handled him extremely well in my absence. During these overseas stints, I also had the guilty realisation that I was enjoying my father’s absence. By not seeing him and my mother suffer on a daily basis, I felt… liberated. I admonished myself for being a bad son, but I couldn’t ignore this overwhelming sense of relief flooding through me.

My leisure time and social life dipped to zero.

My leisure time and social life dipped to zero. If I felt like having a drink – and I did feel like that often – I drank at home, after everybody had gone to sleep. Interactions with friends happened through my laptop. Happiness moved online. I decided not to have any romantic relationships in my life for many reasons. One, I wasn’t in the frame of mind to actually contemplate romance. Two, I didn’t want to complicate my life further. Three, I knew that a special new person would draw me away from my immediate responsibilities.

The only positive development, if I could call it that, was that my father’s condition inspired me to write a short story which won an award.

Can you share a few challenging situations you faced while caring for your father? Can you tell us how you handled them?

Almost all the day-to-day problems we face with my father revolve around smoking. Around two years ago, I and my mother decided to curb his habit and we’re still facing the consequences of that decision.

Ever since we rationed his cigarettes – to around 5 a day – he began stealing from home to fund his habit. No matter how well we hid our wallets and purses, he dug them out. We soon realised that in this one aspect – his desire to smoke – his resourcefulness exceeded that of a “normal” person. On those days when he didn’t find any money, he began buying packets from the local shopkeeper on loan. Of course, once the nicotine entered his bloodstream, he had no recollection whatsoever of having asked for the loan. On one occasion, he willingly accompanied me to the shop and blasted the shopkeeper for lying through his teeth. ‘Everybody’s a crook,’ he thundered. Of course, the next evening, he was back at the shop, begging for cigarettes.

Once the loan-route was sealed off, he began scanning the roads for cigarette butts. If he found a butt that could offer a single drag, he’d pick it up – no matter how filthy it was – and smoke it. This new development worried us no end. We could somehow endure the social stigma of such behavior, but what if he were to catch an infection from a cigarette butt?

We temporarily reverted to his earlier quota of cigarettes, but he did not give up the practice of picking up butts from the road. This has now become an enduring ritual and we have no idea how to deal with it.

Now, he’s acutely aware of when he will be given a cigarette – like, after the morning coffee, after lunch, after the evening tea and then after dinner. So meals and beverages have become harbingers of nicotine for him. He wants to rush through them so that he can get his cigarette. Even the slightest delay in placing a cigarette in his hands provokes extreme anger. At all other times, he’s meek as a kitten.

Our only hope is that memory – which has been reduced to less than a dozen sketchy details in his mind – one day refuses to remind him that he’s a smoker.

From the above account, you may have also realised that he has become schizophrenic. One moment, his mind is plotting its way to a cigarette and the very next, he believes himself to be innocent as a lamb. At such times, he accuses us of being callous. ‘Nobody understands me,’ he cries.

He’s almost always anxious and, as is common, he keeps repeating his questions ad nauseum. When he’s visiting his sister, he assumes her to be his daughter (my sister) and keeps fretting that his grandchildren have not returned home. All we can do is calmly tell him that his grandchildren are safe and happy in another city and he has no reason to worry.

Often, spouses find it difficult to move from a partner role to a carer role. Can you share how your mother handled this transition? How do you think a child can support a parent who is caregiving the other parent? Any advice, looking back?

My mother is like the Rock of Gibraltar. She’s a natural caregiver. Having spent her youth in a joint family that expected her to be the dutiful daughter-in-law, she’s used to taking care of the smallest needs of a large group of people. So she barely flinched during the transition from the role of a partner to that of a caregiver.

She was, of course, shaken by the first diagnosis of dementia. During that time, and later during particularly stressful times, I just offered her a shoulder to cry on. She didn’t expect much more than that. Other than that, I interfaced with doctors and informed her of time-tested techniques from the medical world. Whenever she resisted the proper caregiving technique – because it went against her instincts – I persisted with my talks till she accepted the technique. For instance, she became quite defensive of my father when someone wasn’t empathetic enough to his condition. Alternatively, she’d try to reason with my father to behave more rationally. In such times, I had to ask her to let him be. People suffering from dementia do not understand logic. But they do understand a hug, a squeeze of the hand, a caress. My father’s especially fond of hugs. He doesn’t care who gives it or why it is being given. He responds very positively to that form of affection. So we try and give that to him. As much as possible.

I think that in today’s day and age, the child can help the parent the most by:

  • Being there, as much as possible.
  • Reassuring her that society’s perceptions does not matter two hoots. My generation finds it easier to accept this premise and I can, therefore, sell the idea to my mother.
  • Exploit the power of the internet to keep her informed.
  • Remind her that she has the resilience required to undertake this super challenge.

If I were offered the twisted choice – as to which of my parents should be affected by this condition – I’d choose my father. Because women have an infinitely larger capacity to handle pain than men. So my mother can, all said and done, take much better care of my father than vice-versa.

Were there things you considered or did to improve your father’s quality of life? Did it seem possible? Any tips?

My father was an ‘extra-strong’ personality in his prime. And his assertive attitude survived the advent of the disease. I realised very soon that there was no way he was going to turn obedient. We had to accept his wishes, whether we liked it or not. All we could do was to make sure that he wouldn’t harm himself (he isn’t the kind of person who’d harm others).

So these were the decisions I took:

  1. He insisted on going to the temple every morning, unsupervised. We knew it was to scout for cigarette butts on the road. And to dip into the priest’s plate for a coin or two. But if he was denied this outing, he became furious. So I decided that he would visit the temple, come what may. My mother, when she visited the temple, dropped enough coins on the plate to compensate for the priest”s and the Lord’s loss. Once he returned from the temple, he was calm. The rest of the morning and afternoon passed like a hazy summery dream.
  2. In the evening, he’d again want to go to the park for a brisk walk – and I mean brisk. Even today, he sets a Gandhian pace for the rest of us. We were reassured by the fact that the park was quite close to home. And the locality we lived in had become familiar with him and his ways. Like the kind shopkeeper, who never took offence to his outbursts, the people in the neighbourhood would, we felt, return him safe to our home in case he got lost. But he never did. In fact, he self-regulated his walks. During the first year, he would walk into distant neighbourhoods, sometimes through thick traffic. But as soon as he realised that he was losing his bearings, he restricted his walks to shorter distances. Soon, his walks began and ended in the local park. This self-regulation, I think, was put in place by his fear of getting lost. I, for one, did not want him to vegetate at home and lose his physical health – which, touchwood, is still rosy, thanks to his penchant for walking. So I decided that there would be no restrictions on his walking and I think it’s one of the best decisions we’ve taken.
  3. Upon a doctor’s advice, I prepared a photo album for him, tagging each photo with detailed annotations and dates. We kept this album within his reach. He’d open it every day and pore through it, as if he were seeing it for the first time.
  4. I took him and my mother for a workshop held by my city’s ARDSI chapter, a magnificent organization that helps families like mine. At that workshop, my mother listened to experts and other caregivers. Knowing that we’re not alone in this situation helped her a lot. She also got plenty of practical tips on how to handle aggression, repetitive questions etc.
  5. My suggestion is to map behavioral patterns with the times when a particular medication was initiated. You might make a discovery.

    We consulted various doctors regarding his medication. I had a feeling that Donep (and other brand names of the same compound) was not really helping him. If anything, it was making him more aggressive. Some doctors insisted that better results would be achieved over time. But even after years, the medicine achieved nothing productive. I consulted another doctor and with her blessings, stopped Donep on a temporary basis. We found that his mood actually improved. He was a little more lucid and a little less worked up. I suppose these drugs do have different effects on different people. Some other victim’s reaction to the withdrawal of Donep might be entirely different. My suggestion is to map behavioral patterns with the times when a particular medication was initiated. You might make a discovery.

Your mother finally moved along with your father to their village. What sort of pros and cons were considered while making  this move?

Well, my mother did not allow me to consider pros and cons. She was quite convinced about the move. I wasn’t. So I requested the professionals from my city’s ARDSI chapter to pay a home visit and talk to her. They did and realised that she had made up her mind. So they advised her on caregiving and also to report any discrepancy in my father’s behavior at the earliest.

There are many reasons behind my mother’s relocation. I can speculate on and/or verify a few of them:

  1. She wants to be closer to the temples she loves to visit.
  2. She wants me to rethink my own life and, perhaps, find myself a life partner. She’s come to believe that this cannot happen with them over here.
  3. She thinks that my aunt – who lives a stone’s throw away from her new residence – will offer enough emotional and physical support in case of an emergency.
  4. She feels that this is her cross to bear. And hers alone.

I have never been convinced about this move. A room in my home remains empty, awaiting their return. For the time being, I had to restrict myself to a few basic parameters:

  • Their new residence is a condo which has excellent security arrangements.
  • Around 70% of the residents of the condo are retired folks who offer great company to my mother.
  • The locality is small and cosy. Everybody knows everybody. Even auto rickshaw drivers will take you home without asking for the address. It’s that easy to get that familiar with the others. It’s the kind of place that will accept my father’s idiosyncrasies and even celebrate them!

For now, that place is their world. And I’ve made my peace with it.

Are there any problems being faced because your parents are now in a village? How are these being handled?

As of now, there are no logistical and day-to-day problems. The locality has accepted my parents and there’s home delivery for everything.

But my parents are currently travelling in Gujarat where my father has, on one occasion, displayed mild violence because he was denied a cigarette on time. This has made me anxious for my mother. I wonder whether she should be allowed to stay all alone with my father. What if he becomes more aggressive? So my plan is to reassess their situation once they return to our hometown and, maybe, veto my mother’s decision to stay on their own.

I fear that, at the moment, my mother’s desires are in opposition with my father’s. My mother wants and deserves a break every now and then. From time immemorial, her idea of a break has been to travel to a close relative’s home. She wants to continue this practice. But, of course, every new place adds a dimension of disorientation to my father’s mind. My mother is still young and she certainly must lead as full a life as possible. Knowing this, I’d like to explore day care or fulltime care options for my father. But my mother is quite averse to this suggestion because she feels that my father will collapse in her absence. She has circumstantial evidence to back this claim. If he doesn’t have her in his sight for more than a few minutes, he panics. So my mother is even more sceptical about allowing others to take care of my father.

A qualified doctor friend recently told me that in these cases, the caregiver becomes as dependent on the victim as vice-versa. The caregiver begins to define her own life on the victim’s condition. Without the victim’s dependence, she herself is lost. So I must watch out for this co-dependence angle.

…my mother’s state of mind must remain the most important consideration in whatever decision I take.

Having said that, I know that my mother’s state of mind must remain the most important consideration in whatever decision I take. I cannot unilaterally take a decision based on rational thought. I must make sure that she’s onboard with the decision, whatever that is.

In all these situations, I become painfully aware that I’m, after all, a secondary or tertiary caregiver. The brunt of the ailment is borne and best understood by the primary caregiver alone. I cannot be the referee in this tug-of-war against Alzheimer’s.

Have you and your family considered how you will handle care when your father deteriorates? Can you share some criteria/ decisions on this?

I’m quite clear that, when my father is physically incapacitated, we must have a fulltime nurse to assist my mother. Perhaps the nurse will be required before that stage. I’m mentally preparing myself for adult diapers, bedpans, a special bed, bedsores, the smell of disinfectant in the air and the constant anxiety all these things introduce to a household.

All I can do is prepare financially for this era. I’m utilising my father’s absence to undertake lucrative assignments that will fund these times.

It’s amazing how Alzheimer’s teaches one to walk the invisible line between emotions and pragmatism.

Ideally, I’d like my mother to rediscover the joy of life at her age. Maybe explore hitherto-unexplored opportunities. She doesn’t have to be chained to his bed till he passes on. I fear that, when my father does pass on, she’d be left rudderless. So shouldn’t she find parallel meanings in life right now?

…but the final decision on my father’s caregiving model will be my mother’s alone. I’ll give myself no option but to support her.

But, as I said before, I cannot make these decisions on her behalf.I’ll continue to talk to her about these things, but the final decision on my father’s caregiving model will be my mother’s alone. I’ll give myself no option but to support her.

Overall, based on what you have seen so far, is there something you would like to share with caregivers who are just starting their caregiving journey?

To the primary caregivers, I’d say: don’t judge your loved one who’s suffering untold inner turmoil. Let him or her be. You’ll rue the fact that he is a shell of the splendid human being he once was. All the good traits will vaporise and all the vices will amplify. Don’t remember this shell. Remember the past. Remember that he was a great husband/father (or mother/wife).

To the children of the primary caregivers, I’d say: put aside your otherwise perfect life when you address this condition. If your spouse is not empathetic about your suffering parents, then find a way to balance the present and the past. Give your parents a life they deserve while not compromising the future of your marriage or your kids. The modern spouse cannot tolerate loss of control over the TV remote. So please don’t get worked up over his or her inability to tolerate the loss of peace. We live in a transitioning society. It’s up to us find the middle path. Our children may or may not turn up at our funerals. But we must delay the funerals of our parents. More than that, we must make their last mile as happy and memorable as we can.

Thank you, Varun.

Eshwar Sundaresan, writer, talks openly about his father’s dementia and about caregiving, and wishes to acknowledge his identity as “Varun” above. In September 2013, Eshwar wrote a detailed blog entry sharing more related experiences and thoughts (click here: They understand only love Opens in new window); this blog entry helps us appreciate how he has integrated and grown because of his father’s dementia and the related caregiving environment in the three years since the above interview.

Thank you, Eshwar!

[This is part of the caregiver interviews on this site. View the list of all caregiver interviews]

Note: This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of persons with dementia, their families, the care environment, or professionals. Every patient, every family is different and so is their experience.

Care in a dementia day care centre: a social worker explains

Jincy Shiju is a social worker at Dementia Day Care Centre, Bangalore (a service run by Nightingales Medical Trust).  Currently, the centre services six dementia patients for day-time care on weekdays. The activities of ARDSI Bangalore Chapter are also carried out through the Centre. [note]

What steps do you follow to admit a patient for the day care facility?

When a client’s relatives approach us for day care facilities, we first ask them to get the client be assessed by our doctor. During this assessment, our doctor checks the client’s current status and identifies which areas to focus on during rehabilitation and care. We next gather information about the client from the client’s family, using our “client social profile” format, and we sit with the family to get clarifications and additional data about the client.

At the end of this information-gathering, and before we take in the client for actual care, we are therefore well informed about the client’s personal and social history. For example, we know:

  • Client’s personal history, such as preferred name, school/ education, occupation, cities lived in, languages known, family details (such as spouse, children, grandchildren and others), friends/ neighbours, pets
  • Special memories and anecdotes
  • Social involvement, such as whether the client likes to socialize, social activities enjoyed, etc.
  • Emotional habits, such as how the client expresses emotions such as joy, sorrow, does the client like to be touched/ hugged, how the client expresses frustration
  • Religious beliefs and habits
  • Behavior challenges
  • Routine the client is used to
  • Food habits, likes and dislikes
  • Hobbies, activities that the client likes or may want to try
  • Whether the client likes intellectual activities

How do you handle new patients when they are admitted?

We use a gradual approach to help the client adjust to the day care facility and staff.

The first day, the client stays with us only for a few hours, and a relative remains present.

Over the next few days, we increase the hours of the client’s stay with us. The relative remains present at the facility but sits in a different room, not visible to the client. The client is handled by our staff without the help of the relative. We use this adjustment period to get more comfortable about the client’s habits and likes and dislikes, and ask the relative for more data as we need it. The client, too, starts adjusting to our staff and facilities.

Usually, after a few days, we are able to care for the client from morning to evening, and the relative no longer needs to be available for consulting.

Do you provide food? Are the patients comfortable eating the food you provide?

Some families send food with the clients, and we heat and serve it at mealtimes. Others are happy to let us provide food to the client.

How well do the patients adjust to the day care?

Some clients show better behavior here as compared to the agitation they show at home. Others seem agitated and restless and keep saying they want to go home. We usually manage to engage the clients in various interesting activities, and distract them from restlessness.

Sometimes, we do face problems such as restless clients trying to wander, or clients getting angry and aggressive.

Are some clients reluctant to come for day care?

Yes, some clients tell their families that they do not want to come. Sometimes they even refuse to get out of the car and enter the facility. We have to persuade them. But once they enter the facility, they seem happy enough and spend the day peacefully.

Can you give some examples of how you handle challenging behavior?

One of the problems we face is of wandering. Clients get restless and want to go out.

We first try to calm the clients by talking to them. If they want to walk around, we stay close with them or follow them, or we take them for a walk in our garden or to the park nearby. We do not stop them from walking, but make sure they are accompanied. As soon as they seem calmer, we guide them back to the facility.

Sometimes, we also stop wandering by locking the main door, so that they can only wander within the facility. If asked, we pretend that we have misplaced the key, or that the key is with a staff member who is not present and will be back shortly. We then try to distract the client.

Some clients insist they want to go back home. We never refuse this need, but let them know that their family will take some time to come. We may pretend that we have called the family, and that the family members are taking time because of a traffic jam. Or that our van cannot drop the client home back right now because there is no petrol or the driver has gone for lunch. Often, reassuring the clients that they will soon be going back is enough to calm them down for some time. We also try to distract them by sending along a different staff member to talk to them.

On a few occasions, when clients seem extremely restless, we may have to request the family member to come. We once had a patient who tried to climb out of the facility and was extremely agitated. After the family member arrived, however, he was very calm and it was difficult to believe that he had been so agitated just a short while ago.

So, in some situations, you need to call the family during the day, to ask them to take the patient home?

This may happen for medical reasons, or extreme behavior challenges, but is not common.

In case of medical problems, in addition to immediately informing the client’s family, we also call in doctors from the neighbouring hospital to assess the client’s problem and advise us. Sometimes, the client is too unwell to stay at the day care, for example, he/ she may be having a severe asthmatic attack. Then we ask the family to take them home or to a hospital.

Sometimes, when the client is very agitated and insists on family presence, and when we are not able to calm the patient, we inform the family and request some member to come. In such cases, the client usually calms down on seeing the family member, and the family member is able to then leave. Or the family member takes the client home for the day.

How often do you need to call in the family to ask them to come or take the patient away?

We have six clients currently. We usually do not need to call any of their families for help more than once or twice a month.

How often do you communicate with the family regarding the patient’s status and activities?

Every day. We have a register in which we note down the daily report for a client. This is shown to the family every day by the driver who drops the client home at the end. The family signs an acknowledgement for having read this, and also uses the same register to note their comments and to inform us of any change in the client’s status or of any other problem.

In addition to this, family members call us whenever they need to tell us anything, and we also call them in case we need more information, or are facing a problem.

You have patients from different regions of India. Is language a problem at times?

Usually, we are able to understand the client’s language because we have staff members who know the language, or are able to guess the meaning by asking questions. Once in a while, we face problems with a particular word; in such a case, we call the family to find out.

One such incident was when a client kept saying “peshab” and we did not know what it meant, and were unable to guess. The client seemed insistent and agitated, and soiled himself by the time we managed to contact the family and understand that peshab means urine.

Usually, however, families inform us of the words the client will use and we are prepared for handling the client.

Under which situations do you refuse to accept a patient for daycare?

Currently, we do not accept bed-ridden patients for day care. However, we have another facility, Nightingales Centre for Ageing and Alzheimer’s, that accepts bed-ridden patients for short and long stay.

Are some of the patients incontinent? Do you accept such patients? How do you handle incontinence?

Most of our clients are able to tell us when they want to go to the toilet. We also keep watching them for any restlessness. In any case, we take them every hour or so, so that there is less chance of accidents.

In case of accidents, we clean the clients and change their clothes. We have extra sets of clothes for such accidents.

Some clients, who are more incontinent, use diapers.

What is the ratio of patient to nurses right now at the day care centre?

The ratio is one nursing aide to 3 patients.  The nursing aides are trained staff who help them with various activities, and two social workers who provide training and guidance and make sure that the care is being given properly. There is also one housekeeper and one driver.

In addition to these persons, we also often have volunteers and counsellors who come in for additional support.

What sort of activities do the patients spend their time on?

In addition to the normal activities like walking, going to the toilet, and eating, we have activities that clients enjoy, such as games. Our staff spends time talking to the clients if the client likes it. Sometimes, we arrange for programs like pet therapy and art therapy. We also take clients for outings. The type of activity and the time spent on it depends on the client’s ability and interest.

Thank you, Jincy!

The day care centre described above is no longer operational, you can check our city wise resource pages for what is currently available in various cities.

[This is part of the expert interviews on this site. View the list of all interviews of health care professionals and volunteers]
Note: This is an interview of an expert/ volunteer. The views expressed and the suggestions given are those of the interviewed person, and not a recommendation being made by Dementia Care Notes. Suitability and applicability of the suggestions remain the responsibility of the reader. For professional advice suitable for your situation, please consult an appropriate professional.

Voices: Caregiving in the news

This page provides links to some online news reports, articles, and personal essays that include dementia caregiver stories from India. They provide an insight into real-life experiences of dementia situations here, the challenges faced, what families do, problems due to lack of information and poor awareness in society, and the use or limitations of various support mechanisms, etc. Articles have been selected to provide a cross-section of recent caregiver experiences and are arranged by their main theme for the convenience of the reader. Themes include: Wandering, Early onset dementia, Elderly caregivers, Decisions and experiences around using care homes, day cares, and attendants, “Remote” caregivers, arrangements, and guilt, Diverse care situations, symptoms, challenges, introspection, comments, and Personal blogs that span the entire dementia experience.

Read the full post here : Voices: Caregiving in the news

This page provides links to some online news reports, articles, and personal essays and blogs that include dementia caregiver stories from India. They provide an insight into real-life experiences of dementia situations here, the challenges faced, what families do, problems due to lack of information and poor awareness in society, and the use or limitations of various support mechanisms, etc. Entries have been selected to provide a cross-section of recent caregiver experiences. They are arranged by their main theme for the convenience of the reader.

Dementia care during COVID.

Home confinement due to COVID lockdown can increase restless and danger of wandering. In an incident in Kolkata, a 91 years old senior with dementia, tired with confinement due to lockdown, stepped out of the house and was found dead soon after: From Kolkata: Alzheimer’s patient found dead on road in Calcutta Opens in new window. Expert comments around his incident and how the lockdoewn is impacting dementia persons are avaialble in this newsreport: Alzheimer’s, dementia patients hit hardOpens in new window

In Mangalore, a senior with dementia, unaware of the COVID and lock situation, drove around till he was stopped and questioned, and was agitated when asked why he was outside. he was not aware of e-passes etc. The police who stopped him were not aware of his medical condition and booked him for obstruction: Mangaluru: Senior citizen with ‘dementia’ booked for obstructing policemen during lockdownOpens in new window.

An article from Chennai shares problems faced by families coping with dementia in COVID times, including the challenges due to the day cares closing because of lockdown. COVID-19: Challenging times for caregivers Opens in new window.

An article from Bengaluru describes challenges faced due to day care closure and problems being faced running residential cares with reduced staff etc Dementia patients, caregivers try to cope with locked down environment Opens in new window.

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Wandering

Wandering is a major problem faced in dementia situations. The selection below includes situations where the wandering person was located fast, or after a while, or never located. We see the impact of alert persons who help the person return home, and also of situations where no one noticed the person who then died or was never found.

In this section:

Social media and an alert society and a case where a wanderer came home safe.

Alert citizens can spot a wandering person, and alert police and citizens can use social media to spread the news. Families can share news of the person whom they are searching for. The Internet can provide a fast and effective way for helping get the person home if our society is alert and willing to act and use the power of the social networks. Read a story about such action: : Netizens help family in Delhi trace Alzheimer’s patient Opens in new window. A quote:

She was found wandering aimlessly on the road by cops who took her to the police station. A message was flashed to all police stations along with her photograph. It was tweeted by DCP (north) Madhur Verma and police commissioner BS Bassi. Soon the post got about a 100 retweets.

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Incidents of wandering where the person did not return.

It is important to realize that many of those who wander may never be found. This article shares some such wandering stories from families where the missing persons are still missing, and also interviews and opinions of experts on the situation of awareness and support in India for such problems. . Read the article at: Where’s my home? Opens in new window. A quote:

It’s been over a year, and she’s still not been found. The family has lodged a missing person complaint with the police and scoured almost the whole of Mumbai. “We looked for her at all the religious spots, destitute homes, hospitals and railway stations in Mumbai but could not find her anywhere,” Sadhwani says.

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Some wandering incidents shared, some other care stories.

Wandering is very common for persons with dementia. This news article shares several real-life stories of wandering and also other care stories and some expert interviews on dementia, awareness, support, and other aspects. Read the article at: Care to remember: The challenges of caregiving for Alzheimer’s patients Opens in new window. A quote:

Sometime in 2005 – nobody’s sure when – Savitri Joglekar strolled out of her home in Ratnagiri. She was found 10 years later in an Amritsar ashram, 2,000 km away from her village.

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93 year old person with dementia wanders, is helped and restored to family.

Sampath Kumar, a 93-year-old resident of Besant Nagar, Chennai, is an ex-serviceman with dementia and a hearing impairment. He went missing while out on a morning walk, and in what his family describes as providential given his state, he was reunited with his family because of the kind and timely action of a scrap merchant who found him unconscious. Read the story here: Missing 93-year-old found 20km from home Opens in new window.An excerpt:

“I realised that he had probably collapsed due to weakness. His clothes were soiled,” he said. “I called some friends and we cleaned him up and changed his clothes. We knew he was hungry so we bought him idlis. I decided to take him to hospital and then inform police.”

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A father goes missing. The family’s description of their search and eventually finding him after some days.

When Paramananda Ponnaiyan’s father,ex-navy officer Ponnaiyan, went missing, the family put in a very intense effort to locate him, pulling in all the resources and contacts they had. They finally found him after three very tense days; he had apparently traveled 35 Km on his own. Paramananda describes this experience in detail in his blog, which has been reproduced by Citizen Matters, Bangalore; check this link: Finding my lost father in Bengaluru Opens in new window. An excerpt:

Any homeless person on the pavements, I learnt, was picked up by the police and handed over to some NGO organisation. For healthy homeless people it is usually the Beggars Colony, and for mentally challenged destitutes it is RVM foundation hospital on Bannerghatta Road. We also found that the places where homeless people can sleep without getting caught by the police are only BDA complexes, railway stations and bus stands.

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A journalist shares personal experiences of her wandering father, and thoughts on this problem.

Divya Sreedharan is a Bangalore-based journalist. Her father, who lives with her mother, has dementia. Divya has shared her personal experiences related with dementia and wandering in her articles, and is deeply concerned about this problem. In an article in 2011 in The Hindu (Lost and found in 17 hours Opens in new window), she describes one such episode in detail. An excerpt:

On the train, my nearly 70-year-old mother tried to calm my father but, eventually, she dozed off. When she awoke, he wasn’t there. A co-passenger had seen my father at 3.30 a.m. standing by one of the compartment doors holding a suitcase. When the train reached Kozhikode at 7.00 a.m., my mother went to the Railway Police Force (RPF). They advised her to wait for a day; then file a First Information Report (FIR).

In a more recent article in April 2014(Missing in mind (and body) Opens in new window), she again talks of her personal experience and also discusses the wandering problem, use of bracelets in India, and such topics. A quote:

“If a dementia patient wearing the bracelet goes missing, ultimately, a stranger has to stop, check the bracelet and then inform us or his/her family. Else the bracelets are of no use,” a source at NCAA tells me.

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A heart-warming incident where a wandering person was restored to his family safely because of alert persons.

In November 2013, residents of an apartment complex in Bangalore realized that the elderly person who seemed to think he was a resident in their complex was having problems remembering his identity and personal details, and were able to calm him and help him and return him to his family. Alertness of the cops also helped. Read the story here: Apartment residents help unite dementia patient with family Opens in new window. An excerpt:

Fortunately, Mrinmoy Lahari, president of the apartment owners’ welfare association, was sitting nearby and noticed Iyer.
Lahari, 74, said, “He looked confused and did not know whom to meet. I realised he was having problems in remembering his identity details. We guided him to our library, offered him water and fruits, and consoled him.”

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A daughter-in-law describes how her father-in-law wandered away and was found dead five days later

In this article, a daughter-in-law describes how her father-in-law wandered in spite of all arrangements they had made, and how he was found in a slum five days later, dead of hunger, thirst, and dehydration. Read the article here: Daddy could have lived, if only Opens in new window. An excerpt:

As Daddy wandered around trying to find his way back home, no one noticed this old man walking all alone. In this city of busy 17 million people, no one had time to read the confusion on his face. No one realised that when he was staring at them, he was actually trying to prod his forgetful mind to remember if he knew this person. He did not ask for food – so no one offered him any. He did not fit the popular image of a destitute – so no good Samaritan tried to help him. He was just a harmless old man…

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Especially challenging care situation: Early onset dementia

When a younger person gets dementia, there are many specail challenges faced by the person as well as the family. The person is still in a very active phase of life, still earning or handling major responsibilities, the savings are low, the children young. Support is even lower for young onset cases, as most support is designed for older persons.

In this section:

Four caregiver narratives by spouses of persons with young-onset dementia.

Four caregiver stories from India, all by spouses of the person with young-onset dementia, are available in the Jan-Apr 2017 newsletter of ARDSI, on pages 6 to 9. The newsletter can be viewed/ downloaded from Dementia News – ARDSI Newsletter, January – April 2017 Opens in new window (PDF file, 13MB). These caregiver stories provide a good insight into the challenges faced in care for such persons, such as the problems of understanding and accepting, the challenge of taking on the role of the primary caregiver as well as earning and handling more responsibilities, the impact on children, and so on. In all these cases, the family was able to avail the help of some dementia organization for on-going support or even day care/ full-time care. Many families coping with similar situations do not have such support.

Some excerpts:

Through personal experience as a care giver, I have doubted myself and my decisions many times. The experience caused me mental and physical stress. Turning to be the sole breadwinner of the family and the primary caregiver was challenging. — From caregiver narrative titled My Life Around Bush – By Anupama Suresh

However, the most important thing that I lost sight of and wish someone alerted me was the support my two young teenagers needed, to cope with their emotions along with myself. I felt they had their own busy life with studies and friends and so their mother’s condition did not affect them as much as it did to me. I was wrong. I was surprised to learn one day when they were invited to join the support group to share their thoughts and they cried, shouted and blamed all for forgetting them. They said, young people like them needed support, if not more support to cope. — From caregiver narrative titled: Beautiful lady Sujata- By Samir Kumar Chatterjee

When he was well, I had never bothered about being practical; banks, finances etc as they were his department. Afterwards, I had to learn it all by myself and now I’m managing. — From caregiver narrative titled: Being an Artist’s Spouse

She was always calm, composed and cooperative and listened to any advice or suggestion. Never ever, she objected to anything vehemently or opposed anything without any solid reason. All this started changing as she grew in years and by the age of 55, she started behaving as never before — From caregiver narrative titled Learn to Accept the Way It Is- By Veteran Wg Cdr DP Sabharwal

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An early onset patient’s story.

Read about an early onset dementia case in this article, Bonds that transcend memories Opens in new window. A quote:

D.P. Sabharwal’s wife falls under the rare “younger person’s case” as she was in her late 50’s when she was diagnosed with the illness. Mr. Sabharwal left his job as a corporate trainer in Chandigarh and moved permanently to Bangalore to take care of his wife.

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Especially challenging care situation: elderly caregiver

Read about situations where the caregiver is elderly (in their 70s, 80s, and even 90s) and looking after a spouse with dementia, or, in one case, looking after a child with dementia.

In this section:

A retired professor’s account of caring for her spouse who has dementia.

In this first-person article, a retired English professor describes her husband and the impact of dementia in their lives. Fifty years married, she goes down memory line to share their earlier years together and describe the sort of person he was, the setting of the symptoms, the state he is now, and also some care related aspects: Life after oblivion Opens in new window. A quote:

Now, he is much more passive, calmer and thankfully, more cooperative. But he is unable to carry out daily habits like bathing, cleaning oneself, having a shave and so on. A male nurse comes home thrice a week to help, but one has to anticipate basic needs. Though still active at 85, he is increasingly disoriented, unpredictable in his behaviour, and unfortunately, also prone to mindlessly eating anything he sees.

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An elderly wife describes her husband’s decline and her care challenges.

In this first-person article written anonymously, a wife talks about how her husband, once a very active person, began declining because of dementia, and how she tries to take care but how it is not easy. She describes her stress and sense of hopelessness in some detail: Confessions of an anonymous woman: For better, for worse Opens in new window. A quote:

But due to a fall, he was bedridden for two months. And when he abstained from his everyday activities, his condition worsened. It has now been four years and I have been the sole caregiver for my husband. It is not easy — every day, I experience depression, anger and guilt alternately.

Embittered by his pitiable condition, I have lost my religious faith. I have developed ailments and seldom leave the house, and on most days, wonder if I will get to talk about anything other than medicines and poop routine.

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A mother in her nineties looks after her Alzheimer’s daughter.

Shefali Choudhury is 92 years old. For several years now, she has been the caregiver for her daughter, Dipikia Basu; Dipika is now in the terminal stage of Alzheimer’s and can no longer communicate or interact. In this September 2010 report in The Telegraph, Shefali describes how her daughter, then in her fifties, began showing dementia symptoms and how she has been cared for all these years. Read the report here. Opens in new window

More description of the case can also be read in a December 2009 article here: Experts warn of dementia epidemic. Opens in new window

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An 85-year old writes about his wife’s dementia.

“I could not accept that Alzheimer’s could happen to my wife a person who was into quizzing, was an avid reader and was full of life,” says 85-year-old brigadier (retired) SP Bhattarcharjya. In this article, this elderly caregiver describes how his wife deteriorated and how difficult it was for him to adjust to this reality. Read: Article by 85-year-old brigadier (retired) SP Bhattarcharjya on the care of his wife Opens in new window.

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Decisions and experiences around using care homes, day cares, and attendants

Support for dementia care at home is very difficult to get. This selection has articles describing situations where such services and facilities are used, and some caregiver accounts about decisions to place a person in a care home.

In this section:

A daughter’s decision to place her mother in care.

In this personal essay, Carol D’Souza, a consulting psychologist, recounts her mother’s advancing dementia and how she and her family made peace with the agonizing decision to put her in a care home. She shares her mother’s dementia onset and how it impacted everyone’s life. She talks of how tough the care became, and of her mother’s changed behavior becoming very difficult to handle. Finally, she and her siblings start looking for a dementia care home as the best way for things to improve for her mother as well as for her own family. Read the full essay at: I never wanted my mother to go into a dementia care home Opens in new window. An excerpt about the state after the placement:

It has been a year since we put mom in a Home. She is more peaceful now; has a better relationship with me and trusts me. But her paranoia has to some extent transferred to her current caregivers. It is distressing each time I visit her as she asks to be taken back home. But what she actually means is that she wants her life as it used to be, which unfortunately cannot be so anymore.

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Home Care or Institutionalization decisions, and caregiver guilt

When we realise that we cannot continue home care for someone we love, we may have to decide to move the patient to institutionalised care, and there is often a lot of guilt involved in this decision. Sometimes, we need to move away for our job or studies. Read a narration where a young man describes the conflicts and anger and guilt as his family members differed over some hard decisions taken for a patient with dementia whom they could no longer handle at home. Read: Home Care or Institutionalization Opens in new window.
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Care Home decision: A wife describes her decision to place her (early-onset dementia) husband in a care facility.

This news article is a conference report but it also includes a caregiver story towards the end. Anupama, 54 years old, talks about her 55 year old husband who had started experiencing problems since the age of 44. She shares the impact on the family and how she had to decide to place him in the facility, and the difficulties faced. See: Dementia costs soaring; govt unfazed (Anupama’s story is towards the end of the article) Opens in new window. A quote:

I cannot keep him with me because he turned very violent in September. Before that I used to leave him at a daycare centre. All my earnings have gone into this.

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Using Attendants: Real-life problems and experiences with getting trained attendants and arranging home care.

This article describes the care experiences of various caregivers, sharing many of the practical problems and explaining the arrangements the families have made for the care. It explains how, in India, there is barely any support and hardly any trained persons for home-care, making things very difficult for family caregivers. Read the article at: What Caregivers Face While Taking Care of Loved Ones With Alzheimer’s or Dementia Opens in new window. A quote:

Murray went through 60-70 applications before he found the right one, and even then it was a challenge. “In the beginning, attenders would change every few months. Some left on leave and never came back, I had to fire a couple of them after a few weeks and then there were those who couldn’t take it anymore and quit. Most people sent by agencies are thoroughly useless.

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Support Group Meetings: Experience sharing at a support group meeting.

Support group meetings offer caregivers an excellent forum to share their experiences and tips. DNA reports one such support group meeting held in Bangalore in July 2010, where caregivers describe the challenging behavior of patients and the social ostracizing the family faces. Volunteers attending these meetings get to understand the situation better and to see how they can help. Read the coverage here. Opens in new window

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A Day Care volunteer’s experience: A 16-year-old shares her learning from interactions at a day care in Kolkata.

Minori Parelkar, aged 16, worked as a volunteer in a day care centre of ARDSI Calcutta chapter. She started her work with many assumptions about the problems persons with dementia face, assuming they were like her occasional memory slips. She was also unsure about how she would interact with the persons at the day care. In this personal piece, she shares her experiences and insights gained across her interactions. Minori’s grandfather was also diagnosed with dementia, and she finds connections between what she learns and the changes she sees in her grandfather, and shares how these have impacted her views and interactions. Read the full article: “Remember me?” (PDF file, article on page 8) Opens in new window. A quote:

It was the weekend after my first week there when I started to think about what I had learned from watching the staff and volunteers at the daycare center, and I began to relate that to how I was responding to my grandfather. I realised that it was better to take on the role of whatever he had given me, be it his granddaughter or his accountant, if only to put him at ease.

With this in mind, life suddenly seemed to be traversing a lot more smoothly.

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Improving quality of life even if abilities do not improve.

In an extensive article on dementia in India, the Telegraph includes dementia patient experiences. Read of how a patient’s condition may not have improved by attending day care, but his quality of life has. Read the article: With a little help from my friends Opens in new window.

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“Remote” caregivers, arrangements, and guilt.

In many families, the children live far away from their parents and are unable to relocate when a parent gets dementia. They try to support from a distance, but face many difficulties and also experience helplessness and guilt. Accounts of such experiences are the main theme in this selection.

In this section:

Daughter describes her father’s dementia, her mothers caregiving, her attempt to support her mother from a distance, and her guilt.

Divya is a journalist whose father has dementia. She often writes informative as well as personal articles about dementia. In this article, she combines useful information on dementia, authoritative quotes and excerpts, and personal experiences related to her father’s situation and progress and her mother’s caregiving. She also shares some of her helplessness about the limited ways she can help from a distance. Read the full article: The mind never mattered more Opens in new window. A quote:

That my mother is the primary caregiver is something that causes huge guilt in both my sister and me. For professional and personal reasons, we both live elsewhere. But our mother herself has never complained about her situation. Or complained about us. Which, in a way, makes us feel worse about ourselves.

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Eshwar Sundaresan, writer, talks about his father’s dementia, his mothers’s caregiving, and lessons

Eshwar Sundaresan, a Bangalore-based writer, has written a detailed blog entry about his father’s dementia and how it has changed him in some ways and not in others. He was living with his parents, but then his mother decided to move with his father to a place she was more comfrtable with, making Eshwar a remote caregiver. He writes about his mother’s caregiving, and her inspiring strength, and about life-lessons he has learned from his own role in supporting his mother in the caregiving. This introspective piece is available at: They Understand Only Love Opens in new window.

In November 2010, Eshwar’s interview to Dementia Care Notes was published using a pseudonym, “Varun”, to retain his privacy, but he is now willing to acknowledge that he is “Varun”. See it here: His condition affected every sphere of my life: a son talks of his father’s Alzheimer’s . Looking at the two descriptions (the September 2013 blog entry and the November 2010 interview) gives insight into how he integrated his experience in his life-view over time.

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Caregiving from Another Continent: some caregivers share experiences.

In this article, some caregivers living outside India talk of how they are trying to support ageing parents in India using daily phone calls, Skype, and frequent visits. They talk of how they monitor the health of their parents and try to train/ supervise the help using phones and visits. They talk about the guilt they face. Caregiving From Another Continent Opens in new window. A quote:

For a decade, until her mother’s death in January 2012, her habit was to visit India once or twice a year and call each morning before going to work. Gradually, Ms. Dhar became aware her very energetic, very independent mother was developing dementia.

“She would say ‘I’m so lonely. When are you coming to visit?,’ and the guilt would kick in because you know she’s alone and you feel responsible,” said Ms. Dhar, who said she came to dread the morning conversations.

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Diverse care situations, symptoms, challenges, introspection, comments

This selection is a cross-section of how dementia presents itself, of various caregiver challenges, and how care affects them. Some single, personal pieces where a caregiver talks of their care journey and its impact; others are interviews of multiple caregivers, sometimes including data on dementia and resources and comments by experts or volunteers.

In this section:

Nine caregivers talk about their experiences of symptoms, diagnosis, care challenges, and heartbreak.

Scroll.in has a detailed article where nine caregivers talk about their personal experiences of seeing a loved one decline They talk of the initual symptoms and how the situation worsened, they describe their heartbreak and the practical difficulties faced in getting a diagnosis and providing care. This is an exceptionally detailed and useful article which you can read at: Living with dementia: The searing ache of being a family caregiver in an Indian city Opens in new window. A couple of quotes:

“He’ll sit with the shloka book [during his morning chants] and when you check up on him an hour later, he’d be on the same page or holding the book upside down like a child,” said his daughter-in-law.

To make matters worse, whenever Mahan proposed that his father needed to consult a psychiatrist, it would be met with the standard accusation: “You want to put me away.” When Mahandass was finally brought in for a psychiatric evaluation after much coaxing, he was handed a “clean bill of health” by the examining doctor.

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Two caregiver stories about caregiver experiences and their search for answers and company.

The New Indian Express has published two articles describing real-life caregiver situations including the changed behaviors, the family’s response, and the search for information and solace. The article, A Look into Life of a Dementia Caregiver Opens in new window, describes several incidents to explain how the behavior changed and how caregivers tried to understand, adjust, and care. A quote:

“Most nights, I’d find him sleeping on the floor and he’d refuse to sleep in his bed. I used to feel helpless and lose my temper with him. Later, I realised that wasn’t the solution,” says Raghu.

The other article, Caregivers Find Solace in Virtual World Opens in new window, is about how some caregivers looked for information and company online. A quote:

“I found an international forum dedicated to Dementia and started posting queries on their wall on a regular basis, seeking members’ advice on the ideal diet, care and routine for a patient,” she says.

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Many caregivers share their experiences.

In this detailed Livemint article, several caregivers share their experiences of challenges and what they did, and experts also give the context of dementia and their suggestions. Read: World Alzheimer’s Day: A caregiver’s struggle Opens in new window. A quote:

“Since short-term memory is affected first, the first person to be wiped from his mind was the most recent one to have entered his life—my daughter and his grandchild,” says Pattabiraman. “As the disease progressed, he couldn’t recall my husband and later, memories of me and my mother were wiped away.”

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A granddaughter describes how her 93 year old grandmother is changing with dementia.

Watching someone you love deteriorate because of dementia can be emotionally heart-wrenching. Someone who was a constant in the life of the granddaughter is now changing as the entire extended family watches and tries to care. Amma and Alzheimer’s Opens in new window. A quote:

The witty and acerbic Amma who had an opinion on everything from fashion to traditions, politics and politicians, religion and films has gone into a non-communicative state. The only thing that catches her attention are those saas-bahu serials.

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Prem Panicker’s blog entries on his mother’s death and his memories

Prem Panicker’s mother had dementia. After her passing, he has made a couple of blog entries where he talks of her and of the passing. See: Prem Panicker’s blog entries on the dementia experience Opens in new window. In these entries, he describes her dementia, how it grew, how the family started finding out what it was, and how such problems had been there with his grandmother and her mother before that, only in those days there was no name for it. He shares incidents of the changes in his mother and trying to come to terms with them. A quote:

One day, I got out of the car and turned and saw mom waiting by the door, a beaming smile on her face. “Did you have a good trip?”, she asked. “Have you eaten anything? You are looking so thin!”
And then she called me by the name of her only brother – the man who had disowned her when she got married against her family’s wishes; the man she had never spoken to for over 50 years; the man who was long dead.

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A caregiver shares her experience and says awareness is key to improve things.

In the March 2014 issue of Alzheimer’s Disease International’s Global Perspective newsletter, a caregiver describes her experiences and suggests that improved awareness would make a lot of difference to the situation. Read the story on page 8 of the issue, PDF file downloadable here (page 8 has the “carer’s story”: Better dementia awareness will make a difference) Opens in new window. An excerpt:

One major problem was that people around us did not understand her situation. They dismissed her diagnosis claiming I was making excuses because “she looks perfectly normal”. They believed her complaints (such as her saying I was starving her) and lectured me about duty and love. If she made mistakes while talking to them, they corrected her or laughed at her or exhorted her to try harder. They kept talking about elder abuse by children, which made her suspicious about me. Once a neighbour egged her to assert herself by going out alone; advice that precipitated a wandering incident.

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A daughter shares how her father changed with dementia and how the family came to accept the new reality.

Annie talks about her father Jacob, an engineer, who had been the carer for the family and children for years, but who now needs care because of his dementia. She talks of the changed behavior, and how the family took time to adjust to the role reversal of this new reality. She talks of her emotions while watching her father deteriorate, and how they are managing now. Read the article here: Confronting a devastating disease Opens in new window. An excerpt:

“He would get up in the middle of the night and turn all the lights on, leave taps open or soak all the clothes in water. He would pace around the compound aggressively, chasing imaginary thieves away. He would insist that he has not eaten anything immediately after he had finished lunch. Later on, he would refuse to brush or shave or bath – my dad as I knew him, would never eat food without having had a bath. My mother could not cope nor understand that it was the disease which was changing him. Her coaxing him to do things irritated him so much that twice he struck her down.

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Preparing for Alzheimer’s: a daughter’s lessons from caregiving.

Alanna Shaikh, whose father suffered from the disease for a decade, is keenly aware that it can run in the family. So she is doing all she can to prepare herself for the worst. She shares her thoughts in this first person account: Preparing for Alzheimer’s Opens in new window. A quote:

I keep my mind active, too, both in my work (in international development) and in my daily life. I watch what I eat; I take my cardiovascular exercise. But that does not mean I’m safe, because Alzheimer’s, especially the early-onset type that my father had, tends to run in families. And while there are no firm numbers, it is clear that those who have a parent, brother, sister or child with Alzheimer’s are more likely to develop the disease.

So at 38, I am getting ready. Instead of just hoping it won’t happen to me, I am preparing in case I get Alzheimer’s disease.

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Poverty, isolation, depression, and dementia: a tragic story of a caregiver daughter and her mother.

In December 2010, Express Buzz published a story describing the state of a daughter looking after her ill mother. The daughter, who had been able to get a college education because her mother had worked as a labourer to earn money, was then unable to take up a job because her mother’s care occupied her all day and night. The mother and daughter lived in a thatched hut, and the only money they got was from persons and organisations that understood their plight. Read the story here: Can society help her? Opens in new window

A follow-up story appeared in February 2011, again in Express Buzz, to provide a tragic update. Read it here: The burdens of care Opens in new window

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Personal blogs that span the dementia experience, including joys and sorrows, challenges, loss and bereavement

Some bloggers have multiple entries with several personal stories around how dementia affected the person and the family and described their lives with dementia. These include happy and sad monents, accounts of events as they happen, as well as reminiscences, and span the entire span of dementia–undetected initial dementia and early dementia, right up to the dying and death, and even their life after the person with dementia died.

In this section:

Sharing along the dementia journey: Nishi Pulugurtha’s blog

Nishi Pulugurtha’s mother has dementia. Nishi Pulugurtha, PhD, teaches at Brahmananda Keshab Chandra College and is also a poet, writer, and reviewer published online and in print in several venues. She also writes about Alzheimer’s Disease. Multiple blog entries of her around dementia can be seen on the Café Dissensus site, and can be located using related tags, such as Alzheimer’s Opens in new window and dementia Opens in new window. These describe her mother’s situation, her feelings as the daughter and carer, some episodes around her and some concerns and observations around dementia.

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Sharing a Parkinson and dementia journey: Sangeeta Murthi Sahgal’s blog

Sangeeta Murthi Sahgal’s father had Parkinson and dementia. In her blog, she shares stories of his life, right from childhood till his end – tales showing how his life and that of his caregivers changed as the disease progressed. The blog is extensive and spanning many years, including memories of years before the illnesses, giving a broader perspective of changes that Parkinson’s and dementia bring and the impact of these on the entire family. See Parables of a Parkinson’s Patient Opens in new window.

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Sharing on final stages of dementia: Anis Hoda’s blog

This touching and highly personal blog has around 50 entries made by a son, Anis, and his wife, Mariam, describing the last few months of the mother’s life as she deteriorated, and finally passed on. She had vascular dementia. The blog is here: My Mother and I Opens in new window. In his introduction to the blog, Anis says, “My mother had a Phd in Chemistry and was Head of Chemistry Department until she retired about 4 years ago. Now she only draws straight lines when asked to write the alphabets.” Anis and Mariam share small and big incidents related to the mother’s life, things she did, memories, incidents. The entries contain touching details of the decline of the mother’s state and her passing away.

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Sharing by Ekta, once a teenage caregiver, and now a dementia volunteer

Ekta and her sister were thrust into a care role when they were still students, because their mother had young-onset dementia. Ekta has shared her experiences through various blog entries and interviews, and is now working in the dementia domain to help other families. Her online sharing includes blogs with multiple entries on her experiences, both as a caregiver and daughter, and also as a volunteer. She has also included caregiver stories from friends and relatives. Her blogs are available at (older blog) careforcarers.wordpress.com Opens in new window and (more recent) fromoutsidethemall.wordpress.com/ Opens in new window and medium.com/@iamunity/ Opens in new window.

Some entries from earlier blogging days: <ahref=”https://careforcarers.wordpress.com/about/buddy-diaries/buddy-diaries-ekta-hattangady/” target=”_blank” rel=”nofollow noopener noreferrer”>A young girl talks to a close relative with early-onset dementia Opens in new window, My Buddy Vana: describing how the stressed, teenaged Ekta was helped by a close friend Opens in new window, and Shraddha: Giving Up Exisiting To Care – a narrative of a very young caregiver dropping out of college to become a caregiver Opens in new window.

Some more recent entries, mainly memories triggered by dates and events, or by some old objects, or due to the dementia volunteer work she does can be seen on Ekta’s more recent blog, for example, under or “memoirs”: Entries tagged with “mother” Opens in new window and Entries tagged with “memoirs” Opens in new window

An interview of Ekta is also available on this website, at A case of early-onset Alzheimer’s Disease..

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Personal blog with 200+ entries spanning the dementia journey and thoughts on ageing

Swapna Kishore, who was a dementia caregiver for well over a decade, blogged about her mother’s dementia and the care experiences in her personal blog. The entries describe her personal journey as a dementia caregiver for over a decade, and share the various challenges faced in getting a diagnosis, learning caregiving skills, coping with criticism, and making adjustments to handle care for her mother, the dementia patient. She also describes her experiences as a volunteer trying to spread dementia awareness and helping caregivers. The blog has over 200 entries, with menu options and links in the sidebar for ease of access; see it at: swapnawrites.wordpress.com Opens in new window.

Some random quotes:

My mother would keep wanting to see her bank passbooks. She could no longer understand the magnitude of numbers and sometimes fumbled over simple arithmetic, which made it even more difficult for her to get the security of being well-provided for.

Around two-and-a-half years ago, I was close to caregiver burnout, unable to handle my mother’s deterioration and frustration and the never-endedness of it all. More out of desperation than anything, I decided to start including “fun” into the activity list of the day. It seemed quite counter-intuitive a measure because in those days, all the hours were a struggle trying to help her do things she either could not do or did not see why she should do (like change clothes after soiling them). It was so joyless a life, so full of chores that the days seemed to stretch with frown-inducing work. To that mix, I added a wooden jigsaw, a toy of stacked rings, a couple of Panchatantra books, and a few other such foolish-looking nothing activities.

A few years ago, I had assumed that any bed-ridden person would feel helpless and miserable all the time. That is not true for her. She seems happier now than I have seen her before (even when she was young). Especially after all the frustration and agitation she showed because of the inabilities caused by dementia, this is so much pleasanter to see.

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Special tips for challenging behaviors: wandering, incontinence, repetitions, sundowning

Changed behaviors are common in dementia, and some of these are worrying because they can harm the patient or others. Some common difficult behaviors seen are wandering, incontinence, repetitions, and sundowning.

What caregivers can do: Understand typical triggers for such behaviors. Observe the patient for possible causes. Evaluate special tips suggested on this page, available in books, and in support groups. Decide on a suitable approach and try out changes. Keep observing what happens and adjust the approach as needed.

A patient’s behavior depends on the state of the patient’s dementia, on what is happening, on the patient’s needs, surroundings, and other factors. You can use changed behavior to understand the patient’s situation, abilities, and needs. Once you understand what is causing the behavior, you can find creative ways to cope. The page, Handling Behavior Challenges, discussed a general approach for changed behavior. This page discusses some specific worrying behaviors seen in many patients.

  • Wandering.
  • Incontinence.
  • Repetitive behavior.
  • Sleeplessness and Sundowning.
  • Links for some other unusual and challenging behaviors.
  • See also….

Read the full post here : Special tips for challenging behaviors: wandering, incontinence, repetitions, sundowning

Changed behaviors are common in dementia, and some of these are worrying because they can harm the person with dementia and others. Some common difficult behaviors seen are wandering, incontinence, repetitions, and sundowning.

 

What caregivers can do: Understand typical triggers for such behaviors. Observe the person with dementia to understand possible causes. Evaluate special tips suggested on this page, available in books, and in support groups. Decide on a suitable approach and try out changes. Keep observing what happens and adjust the approach as needed.

The behavior of a person with dementia depends on the state of dementia, on what is happening, on the person’s needs, surroundings, and other factors. You can use changed behavior to understand the person’s situation, abilities, and needs. Based on this understanding, you can find creative ways to cope. The previous page, Handling Behavior Challenges, discussed a general approach for changed behavior. This page discusses some specific worrying behaviors seen in many persons with dementia.

Note:  This page discusses only non-medicine approaches for behavior. If the person’s behavior is harmful and cannot be managed, please consult your doctor.

Sections on this page:

Wandering

Persons with dementia may wander for many reasons. Examples are confusion, restlessness, desire to go somewhere, pain or discomfort, need to use the bathroom, stress, and distraction. They may not remember where they are. They want to go home and do not know that they are already at home. They forget that they have retired, and want to take the bus and go to office. They go out for a walk but cannot remember the way back. Whatever the reason, wandering is a very common problem in dementia. Some estimates say that six in ten Alzheimer’s patients will wander.

Wandering is a major problem for families. Persons with dementia may leave the home if someone leaves the door open. Staying alert and careful all the time is very difficult. When someone does not return home, the family doesn’t know where to look or what to do. In India, the police may not realize how serious the problem is. They may ask the family to wait for a few hours for the person to return. They may not be able to search much.

Most actions required to reduce chances of wandering depend on family members remaining alert. With more family members doing “work from home” or having to remain at home due to COVID, everyone needs to stay more alert to prevent chances of the person feeling restless/ disoriented and walking out. Wandering can be specially problematic during COVID times as strangers may hesitate more to help out of fear of infection.

Given how common wandering is, you need to remain alert to stop the person from wandering. You also have to be ready to quickly locate the missing person.

Many wandering cases happen when a family is on a train. The person gets off the train at some station at night while the family is sleeping. If you are travelling with someone who has dementia, be careful about this. Getting lost is also common when in an unfamiliar place or a crowded place, like a temple or market or mela. Or when traveling on a bus, etc.

Understand the reasons someone with dementia may wander: Every person with dementia is different. Understand common reasons why persons may wander. Then combine that with your own knowledge of the person and your observations and to see when the person is more likely to wander. For example, does the person get restless when he hears a train? Or when it is time to go to office? Does the person try to open the door if the bell rings? Does the person confuse the sound of the ringing phone with the sound of the doorbell? Does the person keep forgetting where the bathroom is and walk towards the apartment door instead?

Persons with dementia often wander because of unmet needs. As you know the person’s likes and dislikes, you may be able to understand these. Is it the need to go to the bathroom? Is it the need to meet someone, to buy something, or to “return home” to a childhood home? Could the person be restless and reacting to feeling too hot or cold, or feeling the clothes are too tight? When does the person feel more confused about the time and place? Is the person confusing voices on TV with those of real persons? Has the person always walked out of the house after an argument or when frustrated? Is it just physical discomfort, like constipation? Or restlessness caused because of “separation anxiety” from someone? Night restlessness (called sundowning, and discussed below in another section) can also increase the chances of wandering.

Wandering patterns are connected to the person’s personality and earlier life habits and needs. A man may think he has to go to office every morning at eight o’clock. The call of a vegetable vendor outside makes a housewife with dementia rush out to buy tomatoes. The person may get frightened when the phone rings because when the person was younger, a phone call meant there was an emergency.

Change the environment to reduce triggers. Use an understanding of the possible cause of wandering to change the things at home. Make suitable changes in the interactions that may trigger the possibility of the person leaving home and getting lost. These will reduce the chances of wandering.

Reduce things that confuse the person with dementia. Reduce clutter in the rooms. Have more light in the rooms. Use signs for the toilet. If mirrors confuse the person, remove or cover them. If TV programs disorient the person, remove the TV or lower the sound volume. If the person keeps saying she wants to go home, see if putting up childhood photos and old, familiar objects in the room will help convince the person she is already at home.

Look for other triggers and habits and make changes. If the person always picks up her purse before going out, remove the purse. The person will keep looking for the purse and may forget to go out. If the person gets disturbed by the phone, change the ring tone to something the person does not recognize as a phone ringing. If the person wants to go to office every morning at eight, distract her at that time, or remove the clock she might see.

The person with dementia may go out just because she sees a door and opens it. Put a curtain to hide the door, or paint the door the same color as the wall so that it is less visible. It may even help to put a “Stop” sign on the door. Some families find it useful to place a mirror on the door. The person sees her reflection, feels someone is standing there, and turns back.

Consider reality orientation if suitable. This works for some persons with dementia, but may agitate others. Reality orientation, home adaptations, and the related care aspects are discussed in detail on other pages listed at the bottom of this section.

While looking at how to change environments, consider how the person with dementia might respond to the change. What works for one person may not work for another.

Remain alert to initial signs of wandering. Often, persons with dementia show some restlessness before they wander off. They may look around, fidget, get up and pace the room. Notice this restlessness. Watch the body language. Then see if some action can help the person meet the need without risking gettinglost. For example, squirming may indicate that the person wants to go to the toilet. If she is taken to the toilet, her need will be met and she may not keep looking around and get lost.

Any change from the normal routine may increase disorientation and therefore increase the chance of wandering. An outing is one example. When in a crowd or in an unfamiliar place the person may walk around to see things or locate you, and lose her way if left alone for even a minute. You may tell the person to stay still and say you will be back in a minute. But the person may forget that, feel alarmed and start walking to find something familiar. It is unrealistic to expect a person with dementia to remember assurances and feel comfortable in unfamiliar place.

Inform neighbors, apartment complex security guards, and the nearby shopkeepers about the problem. Tell them what they must do if they see the person wandering off. Unfortunately in India, stopping an elder is often considered disrespectful. Neighbors may tell you, what could I do, your mother said she had to go. How could I stop her? Merely telling friends and neighbors to be alert is not enough. You will have to explain the danger of the person getting lost clearly so that they believe you and stay alert.

Get them back home if they wander: In spite of the best of efforts of families, persons with dementia do walk off and get lost. Be prepared for this. Keep the numbers of friends and well-wishers handy. Keep recent photographs of the person and descriptions (height, weight, other characteristics) with you. This will help you make copies and circulate information quickly in case of wandering. If the person wanders, begin the search immediately with the help of family and friends. Inform the police.

Try to ensure the person always carries some identification. The person may not agree to carry a wallet, or to pin a name tag. But you can put a slip of paper with your name and phone number in a pocket of the person’s clothes. Stitch a name tag on the back of the nightgown or kurta. It should be at a place the person does not tear it off, but which is visible to anyone who sees her walking around.

Some countries have bracelets and GPS tracking. Bracelets are useful only if the public knows that persons could be wearing such bracelets. In places where bracelets could be mistaken for jewelry, no one may check a bracelet for a phone number. GPS tracking is not yet stable and reliable in India. Also, person may not carry a GPS phone or may lose it, or someone may snatch it away.

In many countries, the police begins searching as soon as they are told about a wandering person. This is not true in most of India. However, you must tell the police even in India, because the person may be brought to the police station by someone. Or a hospital may notify the police in case of an accident. If the police knows about the missing person, they will contact you.

Resources/ references for wandering

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Incontinence

As dementia progresses, persons start showing some incontinence, urinary or bowel. This increases the caregiving work a lot, and can be awkward and difficult to handle. In the beginning, urinary incontinence is more common than bowel incontinence.

Urinary incontinence is of three broad categories. Stress incontinence is when urine leaks when a person laughs, sneezes, or moves in ways that squeeze the bladder. Urge incontinence is where persons cannot hold back the urge till they reach the bathroom. Overflow incontinence is when small amounts keep leaking. Causes include urinary tract infections, constipation, weak pelvic muscles, and enlarged prostate. Some medications, such as some sedatives, can reduce the sensitivity to bladder signals. Some medications increase the frequency of urination. Understanding enough about the incontinence may lead to some solutions. Many persons with incontinence manage their problem by using pelvic exercises like Kegel’s exercises. Unfortunately, many persons with dementia may not be able to use such techniques because they are not able to understand them, do not think they need them, or just forget to do them.

Getting a medical consultation on possible causes of incontinence is a good starting point. Persons with dementia do not tell when they are in pain or unwell, so medical reasons of changed behavior are often missed. Others around the person with dementia may think that the person is acting stubborn or uncooperative

There are also many other reasons for incontinence in persons with dementia. They may be unable to recognize the urge or know that they need to go to the bathroom for it. They may register the urge too late to reach the toilet in time. They may be scared to walk to the toilet. Or they may not remember where the toilet is, or how to use the toilet once they are taken there. They may be confused or even frightened by the fixtures in the bathroom, and find it frightening to sit on the seat. The clothes they wear may be too complicated to take off in time.

In addition to medical approaches, here are some aspects to check for:

  • Have enough light on the path to the toilet, label the door, simplify the toilet, and add grab rails on the way.
  • Use a toilet seat that is stable and easy to sit on, possibly with grab rails to hold while sitting and while getting up.
  • Use clothes that are easy to remove in a hurry.
  • Check the liquid intake and adjust the timing to reduce the need to go to the bathroom at night. Confusion is highest at night and caregivers may not be awake to help.
  • Reduce or stop drinks that may increase incontinence. These may differ across persons, but coffee is one example.
  • Take the person to the toilet at regular intervals to reduce the probability of soiling. Make this a calm, natural activity.
  • Observe the person’s body language for signs of discomfort that may indicate a full bladder.
  • For the night, if the person is able to use it, keep a commode chair near the bed.

Some soiling is likely to happen whatever you do. Adjust your home to minimize the problems it causes. For example, remove carpets that could become unusable if soiled. Use water-proof sheets under the covers on chairs and sofas. These are easily available in baby shops. Use plastic sheets on the bed under the cotton sheet. Wrap mattresses and cushions in plastic so that urine does not soak through to the foam/ cotton inside, and hygiene can be maintained.

Often, caregivers get very upset when persons with dementia soil themselves. It is common to start telling the person that she had soiled herself and show annoyance and ask the person to change. Sometimes the person may sense something is wrong, and feel ashamed, but it is also possible that the person has no idea what happened. Persons with dementia often refuse to believe they have soiled themselves. This leads to arguments, agitation, and even more problems. They can be uncooperative and refuse to take off the soiled clothes. Everyone gets upset and frustrated.

Often the simplest and fastest way to handle soiling is to remain calm and give the person some other reason to make them change clothes. For example, suggest new clothes because it is evening. Or point to some turmeric stain or ink-spot and say that needs cleaning. Avoid scolding the person or arguing. Even if the person herself says she has had an accident, act reassuring and normal to diffuse the situation and prevent agitation. Just do the necessary cleaning. For hygiene, use disposable gloves while cleaning. To reduce the unpleasantness, consider using face masks while cleaning, and use air fresheners to remove the smell.

Think of how to reduce such accidents in future. Find creative ways to reduce the problem, and accept that accidents will happen even if you try hard to prevent them.

Bowel incontinence is more difficult to handle, but is also rarer. It is easier to be alert on the person’s need to pass motion. Also, persons usually communicate this more easily. Even so, accidents will happen. Be more alert after meal-times, when the bowels are likely to move. Track when the person last passed motion to know when the person may next need to go. Check for constipation. Consult the doctor for tips on dietary fibre and stool softeners. Exercise reduces the chance of constipation.

Ensure hygiene by washing and drying the person. Soiled clothes need to be disinfected and washed.

Use of incontinence pads and panties can reduce soiling. These are expensive but effective. Some persons wear them without fussing. Others refuse, and may even take them off and throw them away, even if soiled. Some persons accept incontinence underwear more easily than diapers. These incontinence underwear look similar to normal panties.

Resources/ references for incontinence: external links (may need to be adapted for India)

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Repetitive behavior

Repetitive behavior is very common in persons with dementia. They may ask the same question or say the same thing again and again. Or they may do the same action again and again, like washing hands, or going to the toilet. They may demand food just after having eaten.

Repetitive behavior may happen because of many reasons, such as:

  • The person forgets that she has asked the question before, or done that action just a few minutes ago.
  • The person has a need that was not met by the answer or the action.
  • The person has gone in a “loop” and cannot break out of it.
  • The repetition is because of some emotion or need. The person is not able to express this need directly.
  • Something in the surroundings confuses or frightens the person.
  • Some medicines can cause repetitive movements.

It is common for family members to get irritated or feel helpless when the person with dementia repeats the same question. They may snap back. This agitates the person. The situation starts getting worse. Here are some things to try for repetitive behavior:

  • Repeat the answer more slowly. Use brief, simple sentences. Talk in a reassuring and calm way.
  • Add gestures to your answer. Or use a slightly different way of answering.
  • If the person seems disturbed, be reassuring. Use “validation” of the emotion for the underlying concern. Some links at the bottom of the page provide discussion on the validation technique.
  • Check if the person’s concern is for something different from what she is asking. Answer the actual question the person has in mind.
  • The person may just want company, and is asking questions to get attention and company. Sit with the person and give them company.
  • The person may be in a “loop”, and is repeating the question out of habit. If so, try distracting or remain respectfully silent to break the loop.

For example, a person could be asking repeatedly for the date because she expects to be taken for an outing on that date. You can answer that worry of the person. For example, you can say:  Today is Monday. We will go to the park tomorrow, Tuesday. It will be great fun.

A common situation is the person asking family members again and again whether they have eaten their meal. This could just be the person expressing love and concern. It could be her polite way of telling you that she is hungry. Maybe she is acting as a hostess or making polite social talk. Sometimes a visible gesture, like pointing to an empty plate, can convince her that you have eaten. You can also ask her whether she has eaten. This completes the social ritual and makes her stop asking the question. Every family has to find its way for such situations. What you need to remember is that the person is not doing this to intrude or annoy. Stay calm and gentle.

Persons with dementia may also repeat an action. Some forms of repetitive actions are more common in some dementias. Examples are repeatedly tapping or keeping on doing something after it is complete. Repetitive actions can also be caused by some medicines. Discuss with the doctor and ask for a review of the prescription.

One common repetitive action is insisting on being taken to the bathroom repeatedly. Again, there could be many reasons. For example:

  • The person may be suffering from constipation.
  • Perhaps the person wants to be taken to the living room and not the bathroom. The person may be using the wrong word.
  • Maybe the person is anxious because she does not remember the way to the bathroom. She is worried that no one will take her to the bathroom when she needs to go.
  • Persons may repeat a request because they are stuck on it mentally. In such a case, distraction will work.

Observe the body language of the person with dementia. Use your knowledge and understanding of the person and situation. Then see how to cope. Techniques available include emotional validation, physical help, reassurance, and distraction. For example, giving the person something to hold or do may distract the person enough to stop the repetition.

Try to understand the triggers. Observe when such behavior happens to understand what may be causing it, and change that.

Resources/ references for repetitive behavior: external links (may need to be adapted for India)

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Sleeplessness and Sundowning

Sundowning refers to the situation when a person shows increased confusion/ restlessness in late afternoon, evening, and night. The person stays awake, restless, and disoriented at night. Changes of wandering off at night are also higher. This gets very tiring for those who have to remain alert at night to prevent any harm. While the person with dementia may sleep off during the day, other family members have jobs to do during the day.

Sundowning is more common in some forms of dementia (and is also seen in delirium). While the precise reasons are not known, some techniques to reduce this are:

  • Check for medical causes for discomfort.
  • Check whether something is tiring or over-exciting the person during the day. Such fatigue or over-excitement makes it difficult to rest at night.
  • If the person is restless at night because she needs to repeatedly visit the bathroom, do not give liquids in the evening and night.
  • Stick to a routine that encourages staying awake in the day. Make sure the day is active but not exhausting.
  • Also remember that someone with dementia may get tired doing simple daytime activities as the person needs to work harder to pay attention and do things. So some persons may need a daytime nap. Without the nap, they may be too tired and restless to sleep by the time it is evening. Remain alert on possible exhaustion as a cause for restlessness. Read the Phelps book mentioned in the See also section to understand more from the viewpoint of someone with dementia.
  • Exposure to bright sunlight during the day may help reset the day-night body cycle.
  • When planning an outing, keep it for the earlier part of the day. This will make sure that the person with dementia is not overexcited or exhausted by the time it is evening.
  • Check to see if the night meal could be causing discomfort. Sometimes making the night time meal lighter or reducing the amount can help.
  • Also examine medication. Some of it may be causing problems. If giving medicine for sundowning, adjust the timing and dose to get the medicine’s benefit at the right time.
  • Reassurances may calm down the person.
  • Use better lighting to reduce the chances of the person frightening herself at night. A night light may help, as it will reduce the agitation of waking up in unfamiliar surroundings.
  • If the person tends to wander at night, make the house safe. Remove objects that can be tripped over, or which can harm or frighten the person .

It is difficult to always stay alert at night. Think about using systems like alarms to know if the person is getting out of bed. Take turns for the “night shift” so that the rest of the family can rest. Sundowning behavior and pacing and agitation at night are particularly high in some forms of dementia. If the agitation is high and could harm the person, doctors may give some medicines.

Resources/ references for sundowning: external links (may need to be adapted for India)

  • Page from Alzheimer’s Association UK Behaviour changes Opens in new window discusses restlessness/ pacing, night-time walking, and other such behavior and suggests tips for coping with these (some suggestions may not be useful in the Indian context).
  • Some information is available here (from National Institute of Aging, ADEAR:Sundowning Opens in new window>.

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More on unusual and challenging behaviors

While the specific behaviors listed above are more common as sources of worry, there are many other changed behaviors that can concern families and for which they need ideas and solutions. Examples are aggression, agitation, anxiety, depression, lack of inhibition, trailing and checking, hiding and losing things, restlessness, shouting, screaming, suspicion, etc. Inability to do things they did earlier may also cause social and family tension/ problems. The causes of changed behavior may be biological, social, and psychological. The environment around the person and the type of interactions can be contributing to the problem.

Hallucinations, and visual and spatial perception problems are also present in some persons with dementia. These increase their challenges and may even result in behavior that can be harmful to them and others. Sometimes, problems occur because the persons does not realize their problems and so they continue to drive or do other things which place themselves and others at risk. Families don’t know how to assess what the person can do safely and to stop them from doing harmful actions in time.

When looking for suggestions on understanding and coping, families can start with the general approach suggested on the earlier page (Handling Behavior Challenges). Note that changed behavior need not just be because of specific problems being faced by the person or the environment or interactions; it could also be because of boredom and problems arising from inactivity and poor health and nutrition.

The “See Also” section below gives several resources and references for special behavior challenges. Many of these are in the form of discussions and fact sheets from various Alzheimer’s Associations, and may need to be adapted to use in India.

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See also…

Resources/ references from Dementia Care Notes and related sites

Pages discussing aspects of above topics in detail

A relevant interview on this site: Handling aggression, wandering, and other challenges: A nurse shares practical tips .

The pages: Caregiver resources in India and Other dementia/ caregiving resources list several resources and sites. Most of these contain tools and tips for handling difficult behavior. Many sites have downloadable files with information. You can also consider attending support group meetings of your local ARDSI chapter or any other local body (our city-wise resource pages may help you locate such groups). Online support groups/ communities are also available; check this section for some possibilities to evaluate. Please note that information and support available on on international sites/ online resources/ online support groups may not be India-specific and may need to be adjusted for use in India. It may not be relevant given the current support structures in India.

External links related to changed/ challenging behaviors and coping

Also, consider reading some of the following books, which have explanations and tips for several behaviors. Of course, a lot of things are culture and context dependent, so some degree of “tuning” and creativity will be required to adapt the suggested tips to a situation, but these books contain fairly detailed explanations for a range of behaviors.

Coping with Behavior Change in Dementia: A Family Caregiver’s Guide by Beth Spencer, Laurie White. This book discusses why behavior changes happen in dementia and discusses some general approaches. It also looks at each possible behavior change, explains possible causes for that change, and gives several practical tips for both preventing and handling the behavior.This book is an excellent day-to-day reference to have. It is a go-to book for behavior challenges, and organized in a very friendly way. Highly recommended. Available as paperback and Kindle ebook. Free on Kindle Unlimited.

Breaking Dementia: Finding Acceptance and Hope for This Journey by Rick Phelps, Leeanne Chames. This book is written by someone diagnosed with Early Onset AD (Rick Phelps) and a caregiver who has cared for a mother and a mother-in-law with dementia (Leeanne Chames). Both authors are also administrators of one of the largest and more effective online support forum for dementia (the Facebook group, Memory People). We read about difficulties experienced in dementia, explained by someone undergoing them, and can appreciate how relentless, overwhelming and exhausting it is to live with dementia. We also read a caregiver perspective on how to accept the situation and support the person. Written in a very honest and helpful way, this book gives a deep and realistic understanding of behaviour changes at an emotional level. Highly recommended. Available as Kindle ebook in India. Paperback also available in some countries.

The 36–Hour Day – A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss by Nancy L Mace, Peter V Rabins. This book explains a variety of behavioral symptoms and how to cope with them. It can form a very good starting point for caregivers looking for ways to understand and cope with changes that dementia brings. Available as paperback abnd Kindle ebook.

Read more about these, and also see our list of suggested books at: Books on dementia and care, or surf Amazon.com or Amazon.in for your specific needs.

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Previous: Handling Behavior Challenges Next: Late-stage dementia care

Handling Behavior Challenges

Almost everyone with dementia shows some changes in behavior. On some days, patients get agitated. Or they wander or get abusive or withdraw or do things that can harm them or others.

What caregivers can do:  Understand that these episodes are the patient’s response to a situation. Look for possible causes and reduce them. Satisfy any physical or emotional needs. Check if patient is in pain or unwell. Check if your response or expectations are contributing to the behavior. Chck if the physical surroundings are unfriendly. Consider tools like validation, distraction, and fiblets to bring the situation under control. Keep yourself and patient safe.

  • There are many changes in behavior. Some may cause worry.
  • Ensure that you are calm and positive>.
  • The approach to changed behavior.
  • A non-drug approach.
    • Consider: Is the behavior a “behavior of concern”?.
    • Use ABC analysis to understand patient behavior.
    • Prevent the trigger, or modify the patient’s response. This reduces possible harm.
  • Some tools and tips.
  • Medicines for changed behavior.
  • See also….

Read the full post here : Handling Behavior Challenges

Almost everyone with dementia shows some changes in behavior. On some days, they get agitated. Or they wander or get abusive or withdraw or do things that can harm them or others.

 

What caregivers can do:  Understand that these episodes are the person’s response to a situation. Look for possible causes and reduce them. Satisfy any physical or emotional needs. Check if person is in pain or unwell. Check if your response or expectations are contributing to the behavior. Check if the physical surroundings are unfriendly. Consider tools like validation, distraction, and fiblets to bring the situation under control. Keep yourself and the person safe.

Sections on this page:

The tension around COVID, frequent changes in relevant guidelines, and changed home environment has increased stress levels in families. The daily routine of the person with dementia may also change quite often or get disrupted. All these increase the chances of challenges due to behaviour changes.

There are many changes in behavior. Some may cause worry.

Almost all persons with dementia show some changed behavior. This happens because of many reasons. They may react because they do not understand what is happening. They may have unmet needs. They are frustrated because they cannot communicate. They may not be able to handle their emotions. They may act in socially inappropriate ways. Unsuitable surroundings make daily tasks difficult for them. People expect them to do things they cannot do. Seeing caregiver emotions like frustration and anger can also affect persons with dementia. (This topic is discussed in detail on another page; see: How dementia impacts behavior).

Caregivers usually know that dementia impacts what persons with dementia can do or feel. But they are not ready for so many changed behaviors.

Some of the changed behavior is worrying because it may harm the person with dementia or others. This is called “behavior of concern” or “challenging behavior.”

Many think medicines are needed for worrying behavior. But caregiving techniques can be used to handle many such changes. The Alzheimer Society UK’s page on Antipsychotic drugs says 90% of people with dementia experience behavioural and psychological symptoms, such as restlessness and shouting, at some point. These distressing symptoms can often be prevented or managed without medication.

As a caregiver, you need to look at behaviors that can harm the person or others. You have to try to prevent such behavior.Try and stop it before it becomes too difficult to manage (before it reaches “catastrophic” levels).

Steps taken to reduce or stop a specific behavior are a targetted approach. Here you look at a particular behavior of concern. You try to understand what causes it. You then try to prevent it by meeting the person’s needs.

Worrying behavior also reduces if the person’s sense of well-being improves. For example, home adaptations can make it easier for them to do tasks. As a result, they feel less frustrated and more capable. A suitable daily routine makes the day easier and less stressing for someone with dementia. Better communication makes the person feels more connected. Interesting and meaningful activities make the person more content and happier. All these reduce the possibility of worrisome behavior.

This page discusses an general approach to handle any difficult behavior. (This page does not discuss medicine-based approaches. Please contact your doctor for medical advice.) Additional discussions for some specific behaviors are available on another page on the site; see: Special tips for wandering, incontinence, repetitions, sundowning).

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Ensure that you are calm and positive

brain damage contrast: image from ADEAR
(Image courtesy: National Institute on Aging/National Institutes of Health)

When someone with dementia behaves in an unusual way, you may feel upset. Take a moment to remember:

  • Persons with dementia face real problems: Dementia occurs because the person’s brain has been harmed by a disease. The person faces problems in understanding the environment, doing things, and communicating.
  • Use challenging behavior to understand the person’s problems: Persons with dementia are sometimes not able to explain what they want. They are not even clear about what they want. They are overwhelmed and frustrated. Such problems increase as dementia progresses. Their behavior is their response to the situation. Look at their behavior as information about their needs, and do not get upset by it. You probably do this in other situations. For example, when a baby cries, you see it as a sign of hunger or the need for a diaper change. That is because you accept that this is how the baby communicates.
  • The behavior is the result of the person’s cognitive problems, surroundings, activities, and interactions: You may be expecting more than what the person can do. Your expectations and interactions may affect the person. Examine the situation honestly and change accordingly.
  • You can try to understand the person: You are in a position to use your knowledge and abilities to understand the behavior. Do not expect the person to understand things as well as you can, because the person is already facing problems.

Once you calm down, you can think about the behavior and try to understand why it happened. Think about whether it can be harmful. Consider whether you need to do something to reduce it in the future. An approach for understanding and acting is given below.

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The approach to changed behavior

Alzheimer’s Association, USA, on its page, Treatments for Behavior, suggests looking for (last checked on April 2014):

  • Triggering situations: Events or changes in a person’s surroundings that have a role in triggering behavioral symptoms.
  • Medical evaluation for contributing factors: A thorough medical evaluation, especially if symptoms appear suddenly.
  • Non-drug approaches: Non-drug approaches to managing behavior symptoms promote physical and emotional comfort.
  • Using coping tips
  • Medications for behavioral symptoms: To be considered if non-drug approaches fail after being applied consistently

Medicines should be considered only under certain situations. Approaches that don’t use medicines (non-pharmacological/ non-drug approaches) should be tried first.

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A non-drug approach

The broad components in the approach discussed here are:

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Consider: Is the person’s behavior a behavior of concern?

 dementia behavior that is odd but not dangerous behavior of concern

Changed behavior is a “behavior of concern” only if it can harm the person with dementia or others.

Dementia causes a reduction in the abilities. This makes normal activities difficult for persons with dementia. Naturally, they do some things differently. For example, a person may wear a nightgown inside-out, or pour tomato ketchup over ice-cream. Family members are often uncomfortable with such behavior. But these type of actions do not harm anyone. If you tell them to stop, the person may not understand why and may get angry. Trying to “correct” every odd behavior fills up the day with unnecessary “battles.”

When a person with dementia acts oddly, ask yourself: is this behavior harming the person or anyone else? If so, it is a behavior of concern. If not, ignore it.

Examples of possible harmful behavior are:

  • Wandering, restlessness.
  • Screaming, abusing, being rude, mocking, talking unacceptably.
  • Hitting, slapping, kicking.
  • Acting suspicious and accusing people.
  • Hoarding items or losing them.
  • Disinhibition (taking off clothes, asking people for kisses).
  • Sleeplessness and Sundowning
  • Hallucinations or delusions.
  • Incontinence.
  • Poor personal hygiene (not brushing teeth, not bathing properly).
  • Eating difficulties.
  • Anxiety, clinging.
  • Apathy, withdrawal.
  • Sexual advances, groping.
  • Repetitiveness (physical actions, verbal).

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Use ABC analysis to understand the behavior of the person with dementia.

ABC analysis is an approach to understand and address difficult behavior. It looks at three aspects:

  • A: Antecedent: The event that happened just before the person got upset
  • B: Behavior: The upsetting behavior (also called challenging behavior) displayed by the person
  • C: Consequence: The events happening as a consequence of the behavior

You may see nothing unusual in a situation or event. But the person with dementia is responding to it in a harmful way. ABC analysis identifies the triggers of the behavior so that you can see what to modify to reduce that behavior.

The idea is to examine the situation from the perspective of the person with dementia.

  • Personal history and characteristics: Each person has some likes and dislikes, fears and habits, etc. You may get agitated or hurt by some things because of your memories. By looking at the current situation from the person’s viewpoint you may find what caused the behavior. As a family member, you can do this analysis because you know the person’s past.
  • The situation as viewed by the person: The reaction of persons with dementia are affected by their cognitive functions. Something that was okay earlier may cause agitation now because the person cannot handle it well enough, and cannot hide any agitation as he/ he may have done earlier. It is useful to mentally review the typical symptoms of dementia to spot possible causes of changed behavior.

When examining the situation, look at multiple aspects like the person’s environment, the task being done, the interactions, and communication. Consider, for example, a person who gets agitated at a family gathering and insists he must go home. Maybe this is because the person doesn’t recognize the people, or cannot follow the conversation, or does not know or remember where the bathroom is.

Check for health problems, like pain or infection. Persons with dementia often cannot tell others that they are in pain. Some other health problem may have happened because the person forgot to take the medicine or skipped a checkup. If a hearing aid doesn’t work the person may get agitated instead of asking for a new aid. Some drugs can cause delusions and hallucinations.

Observation and creative thinking can also help to find possible causes of changed behavior. For example, suppose the person gets more agitated after passing a mirror in the hall. You may realize that the person thinks the reflection in the mirror is a stranger.

Some things to consider when looking for possible triggers (this list is not exhaustive):

One or more medical reasons

  • Problems with hearing aid or glasses
  • Discomfort
  • Pain
  • Constipation
  • Infection
  • Fatigue
  • Depression
  • Dehydration or malnutrition
  • Side-effect of medication
  • Illness

Feeling emotionally disturbed

  • Remembering some very unpleasant incident
  • Scared of someone
  • Missing some dear one

Dissatisfied/ frustrated because of communication failure

  • Unable to say what they want
  • Unable to explain something
  • Unable to understand others
  • Feels insulted
  • Feels frustrated

Overwhelmed by surroundings

  • Cluttered with objects the person cannot recognize or finds frightening
  • Does not know where the bathroom is
  • Does not know where he/ she is
  • Noise
  • Unfamiliar people
  • Too dark

Doing something frustrating

  • Activity is too complex
  • Activity is boring or trivial or insulting
  • Activity is unfamiliar
  • Instructions are overwhelming
  • Lacks coordination required for the activity

Responding to the expectations and responses of others

  • On seeing frustration or anger of others at the person’s actions
  • When by others rushed to work faster
  • When someone points out mistakes or laughs or shows amusement
  • When someone shows disappointment after the person cannot do something or cannot remember something
  • When someone responds to the person by withdrawing, crying, shouting, scolding, or acting sarcastic
  • On being ignored
  • On seeing others get anxious

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Prevent the trigger, or modify the person’s response. This reduces possible harm.

Once you know the trigger, you can reduce or remove it. You can also try to reduce the harmful effect of a behavior. Keep checking whether your solution works, and adjust as needed.

Support groups are useful to discuss problems and share ideas. These could be in-person or online groups. You will meet other caregivers in such forums, and get many viewpoints and tips. Shared experiences give ideas of possible reasons for strange behavior, and also possible solutions. Other good sources for ideas are dementia care books and manuals.

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Some tools and tips

(This section covers general tools and tips that can be used for any difficult behavior. For discussions and tips on some commonly found difficult behaviors, read: Special tips for wandering, incontinence, repetitions, sundowning)

Agitated persons are difficult to handle because they do not understand what is happening. They cannot control their emotions. Stay calm when they show anxiety, anger, aggression, hallucinations, paranoia, etc. They can usually sense your emotions. If you use calm words but are feeling angry or frustrated, the person knows your real emotion and responds to that emotion by getting more agitated.

What usually helps:

  • Feel calm.
  • Listen in a calm, affectionate, and reassuring manner.
  • Use verbal and non-verbal ways of reassuring.
  • Avoid arguing. Do not insist that the person is wrong or unreasonable.
  • If the person threatens your physical safety, step back or leave the room.
  • If the person is harming himself/ herself, hold the person firmly. Use only the minimal strength needed to stop self-harm.
  • Try to understand and meet the person’s emotional need.

The response to the person’s agitation must be based on the person’s current state, history, and beliefs. Techniques like reality orientation can work if the person understands explanations. This is more likely in early stages of dementia. However, delusional persons may not accept any explanation. Explaining or arguing will agitate them more. You have to calm the person without telling them they are wrong.

Try to understand the emotion of the person with dementia and then address that.

Supposed the person wants to meet a sister who died years ago. The person believes the sister is alive and lives next door. When someone says: “Your sister died ten years ago, don’t you remember?” the person may get angry and say it is a lie. You need a creative solution instead. For example:

  • If you think the person is missing the sister, you can say: “You really miss your sister, don’t you? Tell me more about her.” This acknowledges the person’s emotional need for his sister. The person may begin talking about past incidents with the sister instead of demanding the sister’s presence. Or maybe the person just wants to talk to someone affectionate. Emotional validation is a very useful technique. View some related links at page bottom.
  • If it seems that the person wanted his sister because of some task, try to find that out. A possible way could be: “I don’t know when she will come. Can I help you with something till then?”
  • Sometimes, therapeutic lies or fiblets are used. For example, you may say, “She’s stuck in a traffic jam.” Sometimes a simple statement pacifies the person, and the person forgets the initial demand. At other times, the person may be suspicious and point out flaws in what you are saying. You may get drawn deeper into explanations and arguments. Many caregivers think of fiblets as lying. But when persons cannot understand the truth or get very distressed by it, fiblets may be kinder than letting persons with dementia remain unhappy. Some links on fiblets are at the bottom of the page.
  • Distraction may work if the person’s emotional need has been met and the person is no longer upset.
  • Some persons recover faster from their agitation if they hear soothing background music. Aromatherapy works for some persons. Touch and massage can also be considered. The effectiveness of solutions varies across individuals.

Once you understand the person’s concern, find creative ways to handle it. For example, if the person thinks he has lost something, acknowledge how annoying and hurtful that is, and help the person talk about it. You can even help the person look for the object though you know it does not exist. The person, sensing your willingness to help, may be able to talk and feel better. Once the person is reassured, try distracting the person.

While various techniques can be used, calming an upset person is usually difficult. To the extent possible, try and avoid a situation where the person gets very upset.

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Medicines for changed behavior

Doctors often give medicines when family members seem worried by the patient’s behavior. Families think medicines are required because they think that when a person has a disease, medicines are needed to solve any problems. They usually don’t ask doctors about non-medical options. They don’t ask about side-effects. They may not even ask how long they should continue to use the medicine and when they need to get the next checkup. They may not go back to a doctor for repeat visits and may continue the medication indefinitely.

Some medicines can reduce dementia symptoms like memory loss. These medicines do not cure the damage in the brain, but they can help the person by reducing the symptoms. However, most medicines given for behavior are anti-psychotics. Doctors may give anti-psychotics even when they are not needed. Though medicines can help some patients, they do not help all patients. They can even harm some patients. Anti-psychotics typically have been developed for mental health problems and are not suitable for persons with dementia. Side-effects are common and can be severe.

Various Alzheimer’s Associations and other dementia bodies oppose the over-prescription of anti-psychotics. They say that non-drug care approaches should be tried first. They have guidelines of when to consider medicines. They discuss the side-effects and trade-offs involved. They also say that careful evaluation and regular review is needed if medicines are given. Note that some medicines that help persons with Alzheimer’s Disease (AD) can harm patients of Lewy Body Dementia (LBD). Unfortunately, it is common for persons with LBD to be misdiagnosed as having AD.

If your doctor suggests medicines, discuss the pros and cons with the doctor. (you can also see an advanced page on this topic in the resource sections below)

Basically, when facing challenging behavior, non-medicinal approaches should be considered and tried first. Anti-psychotics should be used only if required. They should only be used for the right duration and in the correct dosage, and the family must remain alert about side-effects. Regular review by a doctor is a must.

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See also….

Resources/ references from Dementia Care Notes and related sites

Pages discussing some aspects from above in detail:

The pages: Caregiver resources in India and Other dementia/ caregiving resources list several resources and sites. Most of these contain tools and tips for handling difficult behavior. Many sites have downloadable files with information. You can also consider attending support group meetings of your local ARDSI chapter or any other local body (our city-wise resource pages may help you locate such groups). Online support groups/ communities are also available; check this section for some possibilities to evaluate. Please note that information and support available on on international sites/ online resources/ online support groups may not be India-specific and may need to be adjusted for use in India. It may not be relevant given the current support structures in India.

Some relevant interviews on this site:

The full list of interviews is here: Voices: Interviews with dementia caregivers, volunteers, and experts

External links relevant for topics of this page/ referred to above

The following books have detailed explanations for a range of behaviors. They have tips to help caregivers understand and cope with changed behaviors. Many things depend on the culture and context, so you will need to use creativity to adjust the suggestions in the books so that they help in your situation.

Coping with Behavior Change in Dementia: A Family Caregiver’s Guide by Beth Spencer, Laurie White. ]This book discusses why behavior changes happen in dementia and discusses some general approaches. It also looks at each possible behavior change, explains possible causes for that change, and gives several practical tips for both preventing and handling the behavior.This book is an excellent day-to-day reference to have. It is a go-to book for behavior challenges, and organized in a very friendly way. Highly recommended.Available as paperback and Kindle ebook. Free on Kindle Unlimited.

Breaking Dementia: Finding Acceptance and Hope for This Journey by Rick Phelps, Leeanne Chames. This book is written by someone diagnosed with Early Onset AD (Rick Phelps) and a caregiver who has cared for a mother and a mother-in-law with dementia (Leeanne Chames). Both authors are also administrators of one of the largest and more effective online support forum for dementia (the Facebook group, Memory People). We read about difficulties experienced in dementia, explained by someone undergoing them, and can appreciate how relentless, overwhelming and exhausting it is to live with dementia. We also read a caregiver perspective on how to accept the situation and support the person. Written in a very honest and helpful way, this book gives a deep and realistic understanding of behaviour changes at an emotional level. Highly recommended. Available as Kindle ebook. In some countries, paperback may also be available.

The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss by Nancy L Mace, Peter V Rabins. This book explains many behavioral symptoms and how to cope with them. It is useful for caregivers who want to understand and cope with changes that dementia brings. Availabel as paperback and KIn dle ebook.

See the full list of suggested books at: Books on dementia and care or surf Amazon.com or Amazon.in for your specific needs.

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How dementia impacts behavior

In the initial stages, family and friends often don’t realize how much dementia affects the patient. They may see that the patient seems confused or is slower at normal tasks. But they don’t think these changes could be related to dementia. They may even get irritated or sad because they think the patient is stubborn or lazy. This reaction makes patients feel worse and affects their behavior. The patient’s physical surroundings may not be suitable, which adds to their problems.

Persons with dementia have reduced cognitive abilities. This may affect their memory. It affects their ability to do things. It may affect their emotions and reactions. This page discusses how dementia may affect patient behavior. The discussion is not “exhaustive”, but may help caregivers think about what to expect from patients and how to help them. They can then also think of home changes that would reduce the difficulties that patients face and will keep patients more independent and safe. They can reduce the possibility of patients harming themselves and others because of “changed behavior.”

  • The brain gets damaged in dementia.
  • How dementia affects the ability to do things and may cause unusual behavior.
  • How dementia affects the emotional state of the patient.
  • >Reduced cognitive abilities combine with environment and interactions to further affect behavior.
  • Glimpses of how patients experience dementia.
  • What caregivers can remember about dementia behavior.
  • Terminology around dementia behavior.
  • See Also….

Read the full post here : How dementia impacts behavior

In the initial stages, family and friends often don’t realize how much dementia affects someone. They may see that the person with dementia seems confused or is slower at normal tasks. But they don’t think these changes could be related to dementia. They may even get irritated or sad because they think the person is stubborn or lazy. This reaction makes the persons with dementia feel worse and affects their behavior. The person’s physical surroundings may not be suitable, which adds to their problems.

Persons with dementia have reduced cognitive abilities. This may affect their memory. It affects their ability to do things. It may affect their emotions and reactions. This page discusses how dementia may affect a person’s behavior. The discussion is not “exhaustive”, but may help caregivers think about what types of changes may happen and how to help the person. They can then also think of home changes that would reduce the difficulties that the persons face and that will keep the persons more independent and safe. They can reduce the possibility of persons with dementia harming themselves and others because of “changed behavior.”

Sections on this page:

The brain gets damaged in dementia

Brain side cropped: image from National Institute on Aging/National Institutes of Health

You can appreciate that dementia affects behavior if you realize that dementia causes physical changes in the brain.

The brain is a very complex organ with billions of cells (neurons) that communicate with each other. Different parts of the brain perform different tasks. Dementia-causing diseases create physical changes in the brain.
Dementia-causing diseases affect the brain. Which part of the brain gets damaged by dementia, and how this damage increases over time depends on which disease is causing the dementia. Image courtesy for image on left: National Institute on Aging/National Institutes of Health.

The damage to the brain increases as dementia progresses. The damage may become more severe, and more areas of the brain may also get damaged.

The image panel below shows the brain changes that happen in Alzheimer’s Disease, the leading cause of dementia. These images show how the damage gets worse over time. (Image courtesy for images below: National Institute on Aging/National Institutes of Health)


Images showing Pre-clinical Alzheimer’s Disease, Mild Alzheimer’s Disease and Severe Alzheimer’s Disease

preclinical alzheimer brain: image from ADEARBrain of mild Alzheimers : image from National Institute on Aging/National Institutes of HealthSevere Alzheimers brain: image from National Institute on Aging/National Institutes of Health

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How dementia affects the ability to do things and may cause unusual behavior

 

Explanation

Impact on behavior

Brain side cropped: image from National Institute on Aging/National Institutes of Health

 

Image courtesy: National Institute on Aging/National Institutes of Health

There are many diseases that can cause dementia.

 

Different diseases damage the brain in different ways. Also, the effect of a disease on the brain is different in different people

Problems faced by persons with dementia are different from person to person.

 

For example, some may have more problems walking, while others may have more problems while speaking.

Contrast healthy brain with severe Alzheimers: image from ADEAR

 

Image courtesy: National Institute on Aging/National Institutes of Health

As dementia progresses, the damage to the brain increases. More areas of the brain may get damaged.Visible symptoms increase depending on the areas of the brain affected, and the severity of the damage. As more and more parts of the brain are harmed, the person’s ability to perform activities of daily living keeps decreasing. Communication may become more difficult. Memory loss is common in many types of dementia. Major personality changes are seen in some types of dementia. There is an overall deterioration.

 

In the final stages, the person with dementia is fully dependent. The person is often unable to communicate

dementia reduces ability to planEvery task has several steps. Inability to do one or more of these steps means the task cannot be done properly.If the dementia-causing disease has affected the person’s ability to do some of the steps of a task, the person will not be able to do that task alone and will need help
dementia patients are confused and have poor coordinationEvery task requires coordination of various parts of the body and the ability to pay attention. Many parts of the brain have to function properly to perform this.

 

For example, consider lighting a gas stove. For this the lighter has to be put near the burner. The lighter button has to be clicked just when the correct gas stove knob is turned on.

As dementia gets worse, some parts of the brain required for such coordination and focus are likely to get damaged.

The persons will no longer be able to do complex tasks that need precision and coordination. When they try to do such tasks, they may get frustrated or have an accident.
dementia patients mood swings affect their abilities drasticallyEveryone has some fluctuation in their abilities over days, depending on their mood and health and energy.

 

Persons with dementia often show ups and downs in their ability to do a specific task or remember something. Fluctuations in cognitive ability are particularly common in Lewy Body Dementia

Friends and family may find it odd that the person with dementia can remember something on one day but not remember it later. Or when they see the person do a task one day and not on the next day. They may think the person is being lazy or stubborn. It is useful to know that such fluctuations may be common in their form of dementia.
dementia wandering casePersons with dementia may get disoriented because of many cognitive problems. Examples of such problems: loss of memories, visio-spatial problems, feeling uncomfortable because of too much light or noise, inability to recognize common objects around them, etc.This leads to many problems, such as
  • The person may wander and forget the way back home
  • The person may think he/ she is younger and not recognize the children and grandchildren, or may mistake the daughter for the wife.
  • The person may even not recognize the room/ home and may keep insisting he/ she wants to go home
  • The person may be anxious about where the toilet is
dementia patient wrong word usage - says neck for kneePersons with dementia often cannot communicate what they want. They may have problems remembering the right word, or may not know the meaning of words others use. They may not be able to frame sentences.

 

They may also not know what they are feeling; they may not realize they are hungry or thirsty or hot or cold, or even that they are unwell or in pain.

They may not be able to tell caregivers what they want. They may not be able to say that they are unwell or are in pain. So their needs remain unfulfilled. This may frustrate, distress, or anger them, even if they don’t know how to express it.

 

If they are ill, their illness will affect their ability to do things, but caregivers may not realize why the person with dementia is behaving differently today. Also, the caregiver may not realize that the person needs rest/ treatment.

dementia patient wonders whether young girl is sister or daughterIn many types of dementia, persons lose recent memories and revert to older memories. They unconsciously try to fill the gaps in their memories using their imagination.Persons with dementia cannot recognize people or places. They may not even recognize their home and family.
dementia patients find it difficult to learn new thingsOften, persons with dementia are unable to create new memories. They may also have problems understanding complex instructions or concepts.Persons with dementia may find it more difficult to learn new things, use new devices, and adjust to new places. They may get stressed when they meet new people or see new things, and they start avoiding such situations.
dementia patient covers up memory loss, pretends to recognize girlIn many types of dementia, the part of the brain that tells people how to interact socially is not damaged in the beginning. Social interaction ability deteriorates at a slower pace in most persons with dementia.Persons with dementia don’t want others to o know about their problems, so they hide their memory loss and other problems by evading questions. Outsiders may therefore not believe a dementia diagnosis.
dementia patient laughs at a cremation, showing socially inappropriate behaviorThe part of the brain that regulates behavior may get damaged in some types of dementia. This may result in personality changes. The person may become “disinhibited” and not behave in socially correct ways. Emotions may get flattened and the person may show apathy. Such problems are typical in behavior-variant fronto-temporal dementia.Poor behavior regulation often leads to embarrassing situations. Friends and family around the person with dementia may think the person is now a “bad character” or is inconsiderate and insensitive. For example, the person may made rude remarks (even sexual comments), yell or abuse. Or the person may laugh when others are crying. Or the person may lose interest in everything and not respond to emotions of others nearby. Examples of disinhibition include publicly stroking or exposing genitals, making lewd gestures, lifting a petticoat or nightgown, etc.
dementia patient gets hallucinationsIn some forms of dementia, like Lewy Body Dementia, persons may suffer from hallucinations.

 

Delusions and paranoia are also present in some forms of dementia

Hallucinating persons sometimes realize that what they are seeing and hearing is not real. At other times, they may believe what they are seeing or hearing because of the hallucination and get confused or frightened. Familiar tasks become difficult because they cannot distinguish between reality and hallucination. For example, if they see a road split into four, they cannot drive. Family members may not know that the person is hallucinating and hence confused/ frightened.

 

Delusions also affect how persons with dementia interact with others. They may accuse others of stealing their things or of trying to kill them. They may not understand explanations about what is real. It is often difficult to calm down someone who becomes paranoid because of such problems.

dementia patient repetitive behaviorPersons with dementia may repeatedly say something or do the same action again and again. They may show compulsive behavior. This is also called ‘perseveration’.

 

Such behavior occurs for many reasons. They may forget what they said or did earlier, they may be bored or anxious or agitated, etc.

Common examples are when the person may say the same thing repeatedly, ask the same question, make the same gesture, do the same action, call up the same friend again and again, or keep asking to “go home”, etc. Some such repetitive behavior is harmless. At other times it may be problematic. For example, the person with dementia may insist on eating breakfast again. The person may even take the medication again, causing an overdose. Repeated actions, like packing/ unpacking a suitcase or pacing a room, can be very tiring. Caregivers can get annoyed or distressed if they don’t understand why the person is acting like this.
dementia patient showing sundowningMany persons with dementia show changed behavior in the evenings/ night, called “sundowning”. This includes pacing at night, restlessness, etc. While causes for sundowning are not fully understood, they are likely to be related to day time activities, exhaustion, body clock, food cycles, intake of liquid foods near dinner time, and so on.Persons with dementia start acting agitated as evening approaches. They may be keep walking up and down in their room for many hours at night. They may seem agitated and anxious. Sleeplessness is another problem. They may keep mumbling or even shouting. All this can be very tiring for them and their caregivers.
dementia patients show insecurity through behaviors like hiding, hoarding, trailing, etc.The problems caused by dementia can make persons feel insecure.

 

Insecure persons with dementia may cling to caregivers and show more dependence. Or they may feel threatened by the caregivers. They may try to protect themselves or even attack caregivers.

Persons with dementia may hide or hoard objects. These objects may not be valuable but they may get agitated if someone touches the objects. They may accuse others of neglect or theft or bad intentions.

 

Insecure persons may follow the caregiver all the time (also called shadowing) . They may get upset if they cannot follow the caregiver, such as when the caregiver goes to the bathroom. They may keep calling out to check where the caregiver is.

dementia patients may show emotional reactions that seem extreme and unprovokedPersons with dementia may show extreme emotional reactions without any apparent cause. They may withdraw from company and tell close family members to leave them alone, or shout/ scream/ show agitation and anger when nothing seems to have caused it.The emotional state of someone with dementia depends on many factors, many of which are not obvious to persons around them. This topic is discussed in the next section.

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How dementia affects the emotional state of the person

Dementia impacts the person’s emotions in several ways.

Some parts of the brain enable feeling and expressing emotions. If dementia damages these parts of the brain, it reduces the ability to regulate emotions. Also, parts of the brain help us understand facial expressions to know what others are feeling. If these are damaged, the person cannot judge the feelings of others. Persons with dementia may therefore seem uninterested or emotionally “flat.”

We behave properly in society because our brain tells us how to. This brain function may be affected in someone with dementia. If so, such persons may behave in socially “inappropriate” ways. They may abuse others, yell, laugh or cry at inappropriate times. They may take off clothes in public or pass vulgar comments. Such behavior is especially seen in the dementias where the frontal lobe is damaged.

Persons with dementia may sense they have changed. They may know about their poorer ability to think, recognize, speak, do daily tasks, etc. But they may not understand why they are having such problems. They may not understand the diagnosis or they may forget it. As a result, they may show a range of emotional reactions to their situation. They may withdraw or feel sad. Or they may get angry or agitated and shout at people. They may get restless or anxious, and pace of fidget. They may feel insecure and shadow (trail) the caregiver. They may get paranoid and fling accusations.

Memory problems mean that the person may not remember where some object is kept and therefore think someone stole it. Persons with dementia may also forget they ate a meal and demand food again or complain they are being starved. Many persons complain of mistreatment because of such problems.

The physical surroundings of the person usually remain the same even after the persons gets dementia. Family and friends around them also continue to interact like before. This makes the surroundings unsuitable because of the person’s reduced abilities. Persons with dementia find simple tasks and communication more difficult; they get distressed.

Sometimes the agitation and frustration of someone with dementia makes that person go out of control. This is called “catastrophic behavior.” Calming down someone in this state is very difficult. Dementia may even have affected the person’s ability to regulate emotions and calm down.

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Reduced cognitive abilities combine with environment and interactions to further affect behavior

Many people think that “changed behavior” is because of the person’s disease or personality. They don’t think that other factors may also be involved. They don’t see behavior as a response to many internal and external factors. As a result, they don’t change objects and interactions around the person with dementia in order to reduce behavior challenges.

Consider the physical environment around the person with dementia. This directly affects what the person can do. It determines how difficult each action is. For example, the person may not be able to find something if the room is cluttered or dimly-lit. Changes to the surroundings can make it easier for the person to do things and feel safe.

Persons with dementia are also affected by the interactions with others around them. Often family members expect the person with dementia to understand and remember instructions. They expect the person to continue doing their tasks just like they did before dementia. The person may get agitated or may withdraw because of these unrealistic expectations. Emotional responses and facial expressions of family members also affect the emotions and behavior of someone with dementia.

Dementia behavior is a combination of the person’s reduced abilities, other medical problems, and the way the person spends the day. This includes the person’s surroundings, tasks, and interactions. Behavior is not something that can become “normal” by explaining or scolding, or by giving medicines. In some cases, the symptom relief obtained with medicines can improve things especially if combined with more suitable interactions, but even with this, the person does not go back to the “normal” person he/ she was earlier.

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Glimpses of experiences of persons with dementia

Many depictions of persons with dementia are misleading and “stereotypical”. These may show them as vacant-eyed and passive (“just not there,” “absent”). Or they may show them as persons who are always angry, stubborn, and even violent. Such depictions create a stigma. They generalize all dementia persons in one extreme way. Once people hear that someone has dementia, they assume the person has changed totally. This is wrong. Please do not get influenced by these simplistic phrases and depictions.

Persons with dementia are just persons facing more problems than others around them. They are trying to cope. Like everyone else, they want meaningful and happy lives. If given a suitable empowering environment and support, they can have a better life. Their problems will keep increasing, and they will need more understanding and support.

Some persons with dementia have written about their experiences and feelings. They have described their problems, confusion, frustration, and reduction in abilities. They have also talked abut how relieved they feel on learning that their problems were because of a disease. In their personal stories, they talk of how they feel determined and good on some days, and face more difficulties and despair on others. They want to live as well as they can.

Some persons with dementia have written books about their experiences, too.

Several links to such blogs and books are included in the “See Also” section at the bottom of this page.

Imagine not knowing the place, day and time, and not recognizing people. Imagine struggling to find the correct word. Imagine wondering what is going wrong, but ashamed to admit the problems or ask for help. Imagine not knowing that these problems are because of a disease.

Only someone with dementia can knows what it is like to have a confused, undependable mind and body. But some persons have used devices to give caregivers a glimpse of what living with dementia may involve. View a youtube video with a sensitization experiment at this link: Experience 12 Minutes In Alzheimer’s Dementia Opens in new window.

Dementia awareness in India is very poor. Persons with dementia do not get diagnosed when facing the initial symptoms like those described in the personal stories above. They and their families expect “normal” behavior all the time. By the time the family contacts a doctor, the dementia has progressed. The concept of “Alzheimer’s Disease” or other dementias is new to the person getting the diagnosis. The person may not believe or remember the diagnosis and may continue to feel scared or ashamed. This worsens the person’s stress.

By getting a better appreciation of what persons with dementia undergo, it is possible to help them in better ways and also feel empathy.

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What caregivers can remember about dementia behavior

Some things to remember when you see changed behavior and feel uncomfortable/ bad:

  • The brain of the person with dementia has been damaged. This affects what the person can do. Just like someone with heart problem may not be able to climb stairs, a dementia person may find some “cognitive” work difficult. The person’s abilities to think, act, and remember have reduced.
  • Most people have reasons and motives for their actions. If someone said something nasty, it is usual to think he meant it. But in the case of dementia, it is wrong to think that the person with dementia intended to be nasty. The person may not be thinking clearly, or may have spoken something because of some confusion or delusion.
  • Persons with dementia are not acting difficult because they want to trouble others. They are themselves facing problems because their brains are not cooperating with them. Anyone would behave differently if their brains were damaged.
  • If someone with dementia acts odd some day, he may be facing a problem he cannot tell us
  • If someone with dementia gets upset and emotional, he may be frustrated. You can try to see how to help the person.
  • If someone with dementia behaves in an inappropriate way or shows apathy, that may be due to dementia. The brains regulate emotions and behavior. Damage to the brain can affect emotions and behavior.
  • The expectations and response of the persons near the dementia person can be contributing to the changed behavior. /li>
  • The person’s physical surroundings may be causing difficulties and contributing to changed behavior
  • Your brains are working properly. If you cannot understand what the person with dementia is doing, how can you expect the person (whose brain has problems) to understand you?
  • You can learn how to communicate with persons with dementia and to help them. You can learn how to handle challenging behavior. The persons with dementia cannot learn new things, so it is your responsibility to learn how to cope with the situation.

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Terminology around dementia behavior

Many terms are used to describe the changed behavior seen in dementia. Professionals and researchers have different preferences regarding such terms. Usage also differs across communities and countries. Also, two spellings are used: “behaviour” and “behavior”. When searching for information, you may get different results by using different search terms and combinations. Here are some of the main terms:

  • Challenging behavior, difficult behavior, and problem behavior: These terms look at the problems created by the changed behavior. The usual emphasis is the problems created for the friends and family around the person with dementia. These terms don’t point to possible reasons of the changed behavior. Using these does not remind us that the person has cognitive decline. They do not indicate that the environment or interactions may be unsuitable for the person’s situation. Basically, these terms ignore the problems of the person with dementia. Behavior is seen as a problem to be corrected. The focus is on “what” is happening rather than the “why”. However, these terms remind people that something has to be done to reduce the behavior. These are the most common terms used.
  • Behaviors of concern: This term is less negative than the above term. It shows ‘concern’ on whether the person with dementia or others might be harmed. It helps decide which behaviors need to be coped with. Caregivers try to resolve behaviors causing more “concern.” However, the term still focuses on “what” is happening rather than “why.” Caregivers may think “concern” means problematic for them, not for the person with dementia.
  • Needs-driven behavior: This term remind users that the person with dementia may have an unmet need. The needs may be based on the situation or perception. This term encourages caregivers to find the unmet need and do something about it. The term carries no criticism of the person with dementia. It does not focus on whether this behavior is causing inconvenience to anyone. It shows reasonableness: the person needs something, and this need is causing the behavior.
  • Neuropsychiatric symptoms: This term is not used by caregivers. However, it is common in academic circles. Some professionals may use it when talking to patients and families. The term focuses on the symptoms and not on the inconvenience created for others. “Psychiatric” is stigmatizing in some countries. Caregivers may think that because the problem is “psychiatric,” the behavior is a “mental” problem. They may assume that the only solution is using medicines and nothing else needs to be done. Family caregivers, on hearing this term, may think the behavior is caused solely because of dementia. The “needs” angle is missed.
  • BPSD (Behavioral and Psychological Symptoms of Dementia, Behavioral and Psychiatric Symptoms of Dementia): This term is used by academics. It is also common in caregiver circles in some countries. It focuses on the symptoms and not the problems they create. It does not recognize the “need” behind the behavior. It may seem to mean that all changed behavior is because of dementia. Many specialists use “psychological”, but some use “psychiatric” when expanding BPSD. The word “psychiatric” is associated with stigma in many countries. One additional caution: a doctor may scribble BPSD on a prescription. Family members sometimes think this is a new or additional disease.

Regardless of the term used, caregivers need a better understanding of changed behavior. This enables them to find ways to reduce the stress and harm to the person with dementia and to themselves.

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See Also…

Changed behavior in dementia is discussed in many books. Some books also have tips on how to handle them. Some good books are given below:

  • Coping with Behavior Change in Dementia: A Family Caregiver’s Guide by Beth Spencer, Laurie White. This book discusses why behavior changes happen in dementia and discusses some general approaches. It looks at each possible behavior change, explains possible causes, and gives several practical tips for both preventing and handling the behavior. A go-to book for behavior challenges, and organized in a very friendly way. Highly recommended. Available on Amazon (paperback, Kindle) and free on Kindle Unlimited.
  • Breaking Dementia: Finding Acceptance and Hope for This Journey by Rick Phelps, Leeanne Chames. This book is written by someone diagnosed with Early Onset AD (Rick Phelps) and a caregiver who has cared for a mother and a mother-in-law with dementia (Leeanne Chames). Both authors are also administrators of the Facebook group, Memory People, one of the largest and more effective online support forum for dementia. The book describes difficulties experienced in dementia asexplained by someone undergoing them, and helps readers appreciate how relentless, overwhelming and exhausting it is to live with dementia. The caregiver perspective suggests how to accept the situation and support the person. Written in a very honest and helpful way, this book gives a deep and realistic understanding of behaviour changes at an emotional level. Highly recommended. Available as paperback and Kindle in some countries, as as a Kindle ebook in India.
  • The 36-Hour Day – A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss by Nancy L Mace, Peter V Rabins. This book explains many behavioral symptoms. It is a very good starting point for caregivers who want to understand the changes brought by dementia. Available as paperback and Kindle on Amazon.

Read about this book and also see our list of other book suggestions at: Books on dementia and care. This page also includes special sections like Books where Indian caregivers share personal experiences and thoughts and Books written by persons with dementia, describing their experiences of living with dementia.

Caregiver experiences from India that describe the impact of dementia can be seen in our section here: Caregiver interviews and voices.

Caregivers can get a better idea of what persons undergo when they have dementia if they read the books and blogs or view the videos by persons with dementia. Often such sharing is done by persons who have been diagnosed early and are not yet in later stages of dementia.

A collection of voices of persons with dementia is available on this page: Voices: Persons with dementia share experiences.

Caregivers can check out the Dementia Home Care: An Overview. This has discussions on how to approach care, including coping with changed behavior. If specifically interested in “challenging behaviors”, check Handling Behavior Challenges

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As noted above, some images on this page are courtesy National Institute on Aging/National Institutes of Health Opens in new window.

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