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

Plan care for younger persons with dementia

Sometimes, younger persons get dementia. To care for them, you need to consider some additional things.

What caregivers can do: Explain the situation clearly to the family and friends. Get as much support as possible. Be very careful planning for finances. Be ready for higher physical work and more emotional adjustment. Support children as they find it difficult to see a parent with dementia. Get counselling. Look for alternate ways to get comfort.

Some younger persons (below 65 years) also get dementia. Terms used for this are early-onset dementia, young-onset dementia, and younger-onset dementia. To care for a young-onset patient, in addition to the normal planning, you have to pay special attention to some topics. These are discussed here.

  • Plan for reducing or stopping the patient’s work.
  • Take over investments and important matters in steps.
  • Explain the situation to parents, siblings, and other relatives.
  • Help the children of the family accept and adjust to the situation.
  • Make an extra effort to retain friends and social circles.
  • Plan the finances carefully.
  • Prepare for the tough physical work involved caring for a younger patient.
  • Prepare for much higher emotional impact.
  • When looking at available facilities and support services, check if they can handle younger patients.
  • See also….

Read the full post here : Plan care for younger persons with dementia

Sometimes, younger persons get dementia. To care for them, you need to consider some additional things.

 

What caregivers can do: Explain the situation clearly to the family and friends. Get as much support as possible. Be very careful planning for finances. Be ready for higher physical work and more emotional adjustment. Support children as they find it difficult to see a parent with dementia. Get counselling. Look for alternate ways to get comfort.

Some younger persons (below 65 years) also get dementia. The standard term for this now is younger onset dementia, or sometimes young-onset dementia. The other term used sometimes is “early onset dementia”, but this can be confusing because some people also use it for the first symptoms experienced with dementia at any age and this causes confusion. To care for a younger onset dementia person, in addition to the normal planning, you have to pay special attention to some topics. These are discussed here.

Sections on this page:

(For general planning for dementia, see our previous page: Plan care for various stages of dementia)

Plan for reducing tasks and responsibilities of a person with younger-onset dementia

Persons with young-onset dementia are leading active lives when they get dementia. For example, they may be managers, or professionals, like accountants, doctors, surgeons, and lawyers. They may have their own business. They may be the earning member of the family or they may be supporting the earning member. They handle several responsibilities and duties. But their work and their ability to meet their responsibilities are affected by dementia. They find it difficult to do their normal work as well as they did it before their dementia. Teachers may start finding it difficult to explain things to students. At office, these persons may not be able to complete their projects in time. Many start making serious mistakes.

From a caregiver’s narrative[1]: …he was completely unable to remember the dates and started complaining that he was unable to work. He being a banker, had a tough time, at work. … (after a while)…By then he had completely forgotten his daily routines such as how he was traveling, whom he was meeting, where he was going etc. and the bank requested that he resigns his job.

You need to see how to help the person with dementia cut down the work and responsibilities depending on the reduced abilities.

Some countries have laws and systems under which such persons can continue work by switching to different roles. They can get disability or compassion allowances. India does not have such systems. Here employers usually do not make adjustments if an employee gets dementia. They do not tolerate mistakes or losses that may happen because of dementia. They may dismiss a person with dementia because the behavior is odd and could offend customers. Business partners may break off. You need to check what employers can offer in terms of disability benefits, job flexibility, or early retirement. You need to see how to help the person with dementia reduce work or sell off the business.

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Gather information on important aspects of the person’s life.

getting information about finances from dementia patient is often difficult

Find out more about the professional or social life or the person with dementia. Get an idea about the person’s friends and how to contact them. Find out the person’s social commitments to friends and relatives. If the person with dementia has taken on responsibilities but is now not able to meet them, this can cause misunderstandings. Try to prevent or reduce these. Locate some trusted friends and ask them to help you get this information.

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Take over investments and important matters in steps.

Persons with dementia often make mistakes in investments because they no longer understand money transactions. People around may realize that the person with dementia is easy to cheat. They may make the person sign on power of attorney documents or property sale documents, or even taking away jewelry or cash. It is common to hear of persons with dementia giving away all their money to strangers or unknown charity organizations. Business partners may cheat the person out of the share. Because the person with dementia is active and has direct control of investments and property, the family may lose all its money and property.

From a caregiver’s narrative[1]: 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.

Be very careful about cheating. Get involved in matters like investments, property, tax, etc. Locate important papers, and keep them safely. If the person with dementia does not understand or cooperate, get the support of family friends and respected seniors whom the person trusts.

These activities may be more difficult if you were not involved in such tasks earlier, and now have to do them as well as handle the workload and stress of caregiving.

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Explain the situation to parents, siblings, and other relatives.

It is common for close family members to be in denial about the dementia problem. Parents usually cannot accept that their child has dementia. They may even cut off contact. They may blame the spouse. This is common if the son gets dementia because in our society people often believe when the daughter-in-law is called bad. Parents may worry that the stigma will affect the marriage of the sisters and brothers of the person with dementia, and insist on hiding the diagnosis. Other relatives may also deny the diagnosis or blame you.

In some dementias, the persons with dementia do things that embarrass and hurt the feelings of their family. Usually, the person or family have no idea that these changes are because of a dementia disease. Such dementia changes can increase the family isolation if people do not get a diagnosis or believe a diagnosis. This also means you do not get the support of family and friends.

Find ways to make your family accept the diagnosis. Use authoritative literature and to ask counselors to explain things to other family members. This seems like additional work, but making the rest of the family accept the diagnosis is very helpful because then they may support you.

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Help the children of the family accept and adjust to the situation.

From a caregiver’s narrative[1]: …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.

Children may be angry or embarrassed or in denial. They may feel insecure or resent the person with dementia. Often, children are students or just starting their career. An emotional disturbance can affect their future a lot. In India, because of the poor dementia awareness, children may not get support from friends. Even the family may not realize that the children need support, and just assume children are too busy in their own lives.

Plan how you will support the children accept and adjust. Discuss the situation simply and honestly with them. See if you can also explain things to school or college counselors and get their help. Schools and colleges in India may not have counselors who understand dementia. You may have to explain dementia to the counselor.

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Make an extra effort to retain friends and social circles.

Most friends of the person with dementia are leading active lives. They are often too busy to remain connected after the person stops working. Even friends who want to stay connected may not understand what is happening or have enough time to stay in touch. Many friends feel very uncomfortable seeing someone of their own age changing so much and so they avoid the family completely.

Try to stay connected with least some important close friends. Explain the situation openly to them and ask them for support.

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Plan the finances carefully.

From a caregiver’s narrative[1]: I had to resign from my job to become a full-time caregiver for her.

Financial problems are often one of the biggest stress in young onset cases. This is especially true in India, because India does not have good health care plans, disability allowance, or social security. If the person with dementia was the sole earner, your family now has no source of income. There may not be enough savings and wealth for all the expenses, including care, the childrens’ expenses, loan payments, future plans, and all that. You and other family members may need to start earning, but care work may not leave you enough time and energy for this. If you were doing a job, you may find it difficult to manage your work as well as the care tasks. You may have to switch to a lower paying job to get more time and flexibility. That typically adds to money problems. You may need help from relatives now or later, and so staying on good terms with relatives is necessary. Unfortunately, relatives may not help.

Look for ways to earn money while also caring for the person. Think of the skills you have and how you can use them to earn money given the time available to you. Contact friends and others who can help you see what you can do to get money. Look at your current savings and investments to see how to use them for better financial planning.

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Prepare for the tough physical work involved caring for a younger-onset dementia person.

Persons with young-onset dementia are usually strong and in good health. If they resist help they can be very difficult to handle. Supporting them in a task also takes more energy because they are stronger. Typically, helping young onset dementia persons with tasks requires more physical strength and stamina than helping an older person. This is particularly true when the person with dementia is a man. It is even tougher if you are a parent looking after a child with dementia.

Consider how you will do the work and whether you need to employ someone to help. Learn better ways to give help with less physical effort. Get advice from physiotherapists.

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Prepare for much higher emotional impact.

Most people expect that some care will be needed for the elderly. But they are not emotionally ready for caring for someone in the 40s or 50s. The emotional support systems and counseling available for caregivers is poor.

If you are the spouse, you may be sad or angry that you have to give up so many things when you are still young and active. If you are the parent, it can be really heart-breaking to see your grown-up child deteriorate with dementia and become dependent on you. You also have to take care of own old age problems. If you are the child of the person with dementia, and in your teens or early twenties or thirties, you find yourself doing depressing care work while your friends are busy with studies or career or fun. Whatever type of caregiver you are, the emotional impact of care for a younger person can be very stressful.

Try to get counseling or find peace through spiritual activities, creative work, and other stress-relievers. Try to stay in touch with some important friends.

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When looking at available facilities and support services, check if they can handle younger persons.

Most dementia care facilities are like old age homes with special knowledge of dementia. Younger persons do not fit into this atmosphere. Also, many younger persons with dementia have FTD and their main problems are related to behavior. Available facilities are not designed for handling strong young persons with difficult behavior.

When looking at dementia services and facilities, check if they can take care of someone younger and stronger. When hiring attendants, be alert on whether the attendant is strong enough for the physical work. If the person has behavior problems such as odd social behavior or disinhibition, check if the facility or attendant knows how to take care of it.

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See Also…

Resources/ References from Dementia Care Notes and related sites

To understand the stages of dementia and the impact on behavior, read: Stages of dementia and How Dementia Impacts Behavior. To understand how to plan care for dementia stages, read: Plan care for various stages of dementia

For a personal account by a daughter thrust in the role of a caregiver: Ekta Hattangady: Fifteen years old when her mother was diagnosed with Alzheimer’s

External links to pages that discuss younger onset dementia and planning/ important related issues:

[1]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. (The quotes above, superscripted [1] are from these stories)

Understanding the impact of dementia on the person can be very useful while trying to see how to support them. Many persons with younger onset dementia have shared their experiences. Note that these are usually persons who receive the diagnosis when still in early stage and are able to share their stories of heir initial years with dementia, before their symptoms progress and start affecting them too much. a collection of some experience-sharing by persons with early-onset dementia is included on the page Voices: Persons with dementia share experiences.

Also, two links specifically talking of younger onset dementia where onset was detected in the early thirties. This is very rare, but such cases require even more preparation emotionally and otherwise. One is an account of a 34 year old woman who is getting ready for Younger Onset Familial Alzheimer’s because she expects to get it and has seen many close relatives get it: Alzheimer’s at age 34: Alabama mother of 3 prepares for worst Opens in new window. A quote:

She has seen her father die from the disease. And uncles. Her cousin. And while she watches as her older brother exhibit the signs of the disease, the 34-year-old single mother of three children knows her time is near.

Another relevant resources is a video from Australia, describing the case of a 31 year old woman diagnosed while pregnant. The video is available on youtube at:
Rebecca Doig is 31, Pregnant and has Alzheimer’s Opens in new window
and can also be seen in the player below.

Books written by persons with younger onset dementia are also available. Please see our page: Books on Dementia and Care for a list of such books.

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Previous: Plan care for various stages of dementia Next: Adapt the home for persons with dementia

Ekta Hattangady: Fifteen years old when her mother was diagnosed with Alzheimer’s

Ekta Hattangady was 15 years old when her mother, then 45, was diagnosed with Alzheimer’s. Over the next 4 years, till her mother passed away, Ekta juggled the role of caregiver and student, facing the unusual situation to the best she could. Now much committed to the cause of supporting caregivers, she shares her experiences and perspective below. [note]

Your mother suffered early-onset dementia. Often, when old people show dementia symptoms, it is attributed to old age. What sort of behaviors did your mother show which led to the family consulting a doctor for a diagnosis?

Well, the above statement said she was diagnosed at 45, but she was demonstrating “peculiar” symptoms for at least 2-3 years before. When I was 13, I remember she gave me a huge sum of money and asked me to manage the household expenses. In hindsight, this tells me that she was aware of her difficulties. Among other things, she’d forget her keys, to switch off the geyser, put off the gas, have no recollection of having eaten, lack of inclination towards company, etc. The GP said it was probably related to her menopause.

But the symptoms grew worse. She had been teaching at the pre-primary of a popular school and they said that she seemed quite lost. She wouldn’t respond to greetings from colleagues, run out of the classroom wondering where she was, and just not be able to complete her sentences.

Finally, we took her to a psychiatrist, supposedly the head of the Indian Psychiatric Association, and he diagnosed her with Schizophrenia. This is the worst thing that has ever happened to my mom or to me! She had an adverse reaction, became violent and it was impossible to deal with her. I still have a mark just below my shoulder, she had bitten me there.

We finally took her to Dr. Wadia in Mumbai, had an MRI at Leelavati Hospital and he said it was EOAD. Some simple cognitive tests – like asking her who the current prime minister was (she said Deve…Deve…couldn’t complete the word Devegowda) and drawing a clock (saw her number going out of the circle) – helped to understand her problem. The diagnosis came not as a relief, but as a terrible blow. I had lost my mother even though she was alive.

Did your mother register the impact of the diagnosis? In what way did the doctors explain the disease, or prepare your mother, you, and the rest of the family for what to expect?

Like I mentioned before, I think mom knew she was sick, just didn’t know what it was. She didn’t register what the diagnosis meant and she asked if she had “menin..menin…” – she meant “Meningitis”.

The doctors only explained how the disease would progress. They themselves had probably hadn’t dealt with someone who’d got it so young, so it was hard for them to help us prepare for the worst. Nobody thought that we might need help…me and my sister…

You were very young, just in your teens, and awareness of Alzheimer’s was low in those days. What was your understanding of the impact of the disease? What were you expecting? Can you share your emotional response to the situation?

This was before the advent of the internet, our information was limited. However, our GP helped us get info from a foundation in the US, I think it was run by Nancy Regan and I did read all of it. My understanding of the disease was perfect, I knew what would happen, but beyond that, I cannot describe anything else. I did what I had to. I guess some days I felt burdened, I felt depressed, lonely, misunderstood…angry…yea…sure…But I felt an innate sense of guilt, because even before the diagnosis came, I knew what it was…and when it came, I felt my mother got AD because I thought she had it.

I carried the weight around for years. Made wrong choices, dealt with it in a completely unsuitable way, but well, there wasn’t anybody around to think that I needed any sort of support or help!

Can you share some incidents (both happy and unhappy) about how your peer group, relatives, and neighbors responded to your mother’s condition and your new role?

Nope, no support from family, especially extended family. I took it with a pinch of salt, but I guess I am unforgiving. I do not keep in touch or even qualify them with cordial greetings when I see them, even now. At best, I nod and smile. I accept their decision to not help or understand, and they need to accept that I don’t care about them now.

My friends’ families were much better. I went through my class XII and college days only because of my then best friend’s family…I used to stay with them, and her mom made sure I was okay…ate on time…studied…slept…everything. She took care of me like her third daughter 🙂 and I am indebted to her.

My other best friend was in charge of providing the much needed respite of having to think about mom. She was my complete fun quotient. We hung out, did regular teenage girlie things. And I remember those days with fondness and gratitude now.

As a caregiver, what sort of care did you find particularly difficult to give?

Giving care was never a problem, but yea, being around her all the time, I felt irritated. After the so-called active stage of wandering and stuff, caring for her became easy. We just had to feed her and change her and make her sleep. But she needed constant attention. We had a nurse, but I guess my family expected my sister and me to be around. She gave up her studies to care for her! And when she got married, the responsibility fell unto me. I resented that I couldn’t go out and stuff…but I did it anyway. I did go out at nights, requesting our day nurse to stay over, etc. She was really nice. And I think the last two years were the easiest.

Care was never the problem. It was the hurt, what I was going through…my loss of my mom which was the hardest. Even as I write this, I feel my tears well up. I miss my mother greatly. I don’t have any recollections of her as a healthy person anymore and it really hurts. I don’t want to remember her that way.

Were there any difficult decisions that needed to be made? Can you share some examples?

For my sister yes…she had to decide whether she could continue to go to college. My mom was in the wandering phase then and there used to be a lot of tension at home. My grandfather yelled at my sister and said it was not their duty to stop her from leaving the house just because we were at school. That was that, my sister announced at the dinner table that night, that she was dropping out, my father didn’t even react to that.

I was much younger…by the time I was the primary caregiver, she was mostly bedridden, definitely not wandering, etc. So no, I didn’t have to do anything of that kind.

Can you share any fulfilling moments you experienced in those days despite all the problems you were facing?

Ha ha, no…no fulfilling moments. It was my hardwork that saw me get good grades in the class XII exams, and my friend’s family that took care of me. When my mom could still speak, we’d ask her, “Who’s your favourite person in the world?” and she’d say my name….Yea, I remember those moments with love. My mom and I were close. I look like her…it’s, I guess, moving in a way.

Looking back, combining your professional knowledge now with your raw experience as a teenager, can you share some thoughts with us? What type of counseling and practical advice would you give for families of loved ones diagnosed with early-onset dementia?

You have to decide what you do with your life. Don’t put your life on hold. If you can afford help, hire it. Do not feel bad about it. Always share your burden with someone else. Pray lots. It gives strength.

If I am called on for help today, I mostly share my feelings and negative emotions from that time. Most people just feel relieved that they’re not alone in hating their sick loved one or the other members of their family. It’s natural! Alzheimer’s affects the entire family!

Have a support system of people who understand. If it is not your friends and family, seek people who have been caregivers, they’re likely to be more empathetic, supportive and give correct tips.

I am going to sound hard. There’s nothing anyone can do for you or your loved one. N.O.T.H.I.N.G. unless you let them in. So let them in…

Based on what you know, what sort of support systems are available for such families now? What is missing?

I am not qualified to answer this question. But my guess would be networks with empathetic doctors and social workers that can work with families are missing. But honestly, I am not sure I would have sought help even if I knew it existed (it didn’t then). There has to be a way to get the help to the people…when it’s at your doorstep, you’re so desperate, you will try anything. But if it’s away, and you have to attempt to make contact, it is more likely you won’t.

Any other comments/ advice?

My parting advice would be just let people in…share your thoughts more…and you will find you can touch the lives of others like you. There is no better way to heal, than to help someone else heal.

Thank you, Ekta!

P S: Message from Ekta: Do have a look at some related blog entries by Ekta: My Mum was Just like Iris Murdoch Opens in new window and My Caregiver’s Song Opens in new window.

[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.

Plan care for various stages of dementia

The patient’s abilities keep reducing as dementia gets worse. Care has to be continually adjusted accordingly.

What caregivers can do: Understand the stages of dementia and how they will impact the help the patient needs. Plan for the changes in the patient’s ability and the support required. Consider suitable home adjustments. Learn the required caregiving skills. The caregiving workload will increase over time, so consider available support systems. Make required adjustments in other responsibilities.

  • Care approaches as dementia progresses.
  • Care for early stage dementia.
  • Care for mid stage dementia.
  • Care for late stage dementia.
  • Special care aspects for young onset/ early onset dementia.
  • Care for the caregiver (self-care).
  • See also….

Read the full post here : Plan care for various stages of dementia

The abilities of someone with dementia keep reducing as dementia gets worse. Care has to be continually adjusted accordingly.

 

What caregivers can do:  Understand the stages of dementia and how they will impact the help the person needs. Plan for the changes in the dementia person’s ability and the support required. Consider suitable home adjustments. Learn the required caregiving skills. The caregiving workload will increase over time, so consider available support systems. Make required adjustments in other responsibilities.

Sections on this page:

Care approaches as dementia progresses

Dementia typically goes on for many years. The initial symptoms are mild and difficult to see, but the damage keeps increasing with time. The type and amount of help have to be adjusted accordingly. Families must understand how care will change over the years, so that they can plan for it.

The progress of dementia is usually discussed under three broad stages. These are: early stage dementia, mid stage dementia, and late or advanced stage dementia. These stages give an overall understanding that can be used to plan care. Dr. Jane Tolman (University of Tasmania) suggests the care goals for these stages as under:

  • First stage: Work to ensure dignity and autonomy. The care goal is to maintain the independence and enjoyment of the person with dementia.
  • Second stage: Work to ensure safety. This is because the person with dementia is more at risk because of decline in function and insight, and more changed and risky behavior.
  • Third stage: Work to ensure comfort, dignity, and quality of life. This includes reassessing medications and treatment approaches.

Different families have different views on what they consider dignity, autonomy, safety, care, quality of life, and so on. Also, the “stages” of dementia are just a simple way to understand how dementia gets worse. These are not fixed and rigid divisions. Though stages help get an overall understanding, every person’s symptoms are different and they progress differently. Families have to use their own observations and judgment when deciding what they need to do for someone with dementia.

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Care for early stage dementia

Planning for early stage dementia can be done both by the persons with dementia and their family and friends. . At this stage, persons with dementia are able to think about their situation, understand dementia, tell others what they want, and plan for their future. Family members can help them live meaningful, dignified, and independent lives. It is also possible to plan for later stages when more support will be needed.

early dementia patients can plan finances for later stages

Persons can adjust to their dementia situation. They can find ways to continue living in safe and meaningful ways. Early stage symptoms are mild. Persons with dementia can still function independently and do most of their activities with little or no help. But they may become more forgetful and begin to lose their ability to plan and to make decisions. The may have problems with language or have mood and personality changes. Fortunately, medicines can help some patients by reducing the impact of the memory loss.

Once persons with dementia understand that dementia is causing them problems, they can learn more about it. They can adjust emotionally to their dementia and how it will affect their future. They can think how to do what they want to do while remaining safe. This requires some adjustments in their activities and what they expect from themselves. They may need to ask for some help.

Persons with dementia may decide to change how they spend their time and energy. Some may pick up activities they had wanted to do later in life. Some slow down and spend more time on their hobbies or with their families. Some continue their life like they were doing before. Some even get involved in spreading dementia awareness. What is important is, they can choose their direction based on an understanding of dementia and how it may impact them.

Persons with dementia can make changes for a better future. Dementia will lead to reduced abilities and increased dependence. This affects what they can do in future. In this early stage, they can decide what changes they want in their future. For example, if they are working, they may phase out work or business and reduce commitments. If living alone, they can think of how they will move with or near their children. Or they can check out assisted living facilities for themselves. They can create legal documents that will be useful later. Examples are power of attorney and living wills. They can discuss with their families what they want in terms of medical treatment and other arrangements for the later years.

Caregivers can help persons with dementia remain independent and do their tasks. The support required is low in this early stage. Caregivers can find ways to help them live meaningful, dignified, and independent lives.

early dementia patients can use clocks for reality orientation

One activity to plan for this is home adaptations. Caregivers can adjust the surroundings so that persons with dementia don’t get confused and can continue to do their tasks independently. Reality orientation techniques are very useful. Early-stage dementia persons are often able to use aids like reminder notes. They can read large clocks and calendars. Adjust the house to add such aids. Label containers and drawers using words and pictures. Place signs on doors. Put up charts to help them with the steps of an activity (like making tea). Give them medicine boxes so that they can handle their medication. Make choices simple. Choices can be simplified. Reduce clutter to reduce their confusion. If they make mistakes such as mixing up shoes, leave only one or two pairs outside. Place lists of contact numbers at convenient spots so that they can call when they need help.

Another thing to do is to look at ways so that persons with dementia can do their tasks independently or with very little help. They may be able to explain what their problems are. Caregivers can observe when the persons with dementia are slower or more awkward while doing tasks. Make changes that will make the task easier. Or know when to offer help. Give help only to the extent needed, so that they feel capable and independent.

Caregivers can prepare for later care.Care in early stage may not need the caregivers to be present with the dementia person at all times. Effort required is also not as high as it is later. So caregivers can use this time to understand dementia and its impact better, learn the skills they will need, plan for later care, and start making the life changes that will be needed later.

Understand dementia, gather information, and learn care-related skills. This could include:

  • Understand about dementia, its various symptoms, how it progresses, and how it may impact the person now and later.
  • Understand about medicines, when they can help, and what the limitations of medicines are.
  • Understand enough about the person’s medical state (dementia and other health conditions).
  • Learn more about the past, and the likes and dislikes of the person with dementia. Even if you have known the person for years (as in the case of a parent or spouse), you may not know many details or may not remember them.
  • Understand the areas of the person’s life where you may need to support later. Examples are bill payments, financial and tax decisions.
  • Learn how to interact with and help someone with dementia. Learn how to adjust your way of talking to make it easier for them to understand you. Learn how to help them. Read up more on changed behaviors, why they happen, how to adjust to them, and how to handle behaviors that can harm the person with dementia or others.

Special tip:
As dementia worsens, most persons with dementia find it difficult to sign documents. They may not be able to sign cheques. They may not understand finances, investments, and tax returns. If the person agrees, simplify and rearrange finances and taxes so that you can manage them. Discuss this when the person is still in early-stage dementia. You and the person can talk to tax consultants, lawyers, and well-wishers. Possible actions include creating joint accounts, placing jewelry in jointly-operated lockers, keeping some extra cheques signed by the person, enabling Internet banking, etc.

Plan for later care, and start making required changes. This could include:

  • Think about how you will adjust home and work responsibilities to handle care for mid-stage dementia.
  • Start making changes to adjust your various roles and responsibilities. This could include looking for a more flexible job or selling off your business, or moving house.
  • Set up systems for handling investments and tax and finances. Examples are switching over to joint accounts, getting power of attorney, etc.
  • Find a doctor who can advise all through the following years, when the person with dementia will not be able to explain the problems. Look for doctors whom everyone is comfortable with, and who may do home visits.
  • Collect material that could be used later for jogging the memories of the person with dementia. Examples are old photographs, old valued prizes, posters and songs of old movies, and other objects the person may have memories of.
  • Start getting more involved in the person’s life so that the person gets used to the fact that you will now be more actively connected. You will also be able to get more correct information.
  • Tell relatives, friends, and colleagues about the situation. Explain things so that they do not make fun when the person with dementia makes a mistake. Uninformed relatives and friends often give unsolicited advice. They tell persons with dementia to show more “will power” or be more “active.” They do not understand the nature of problems the person is facing. Explain the situation to avoid such incidents.
  • Plan for self-care. (This is discussed more in another section of this page)
  • Be ready for emergencies.

Caregivers need to be alert about risks, and about the dementia getting worse. Persons in early stage dementia can do many things alone or with some help. So they don’t need full-time help. But their ability changes as the dementia gets worse, which could happen slowly or rapidly. Caregivers have to remain alert about reducing abilities, mistakes, and risks. They have to remain alert on how the person is handling activities that may be unsafe. They also need to make sure that neighbors and relatives know about the problem and are alert, so that if they see something suspicious, they can call the caregiver immediately.

Some examples of areas to remain alert about are given below:

If the person with dementia drives, check regularly to make sure the person still drives safely. Confusion about location is common in dementia. Persons with dementia may keep driving in circles. Or they may reach some very distant place and not know where they are. They may also cause accidents. Accidents can happen because of missed traffic signals, confusion, poor responses, and so on. If the person was used to driving around independently, it can be difficult to stop them from driving. Persons with dementia may not believe or remember that they are no longer safe drivers. In early dementia, when the person can appreciate logic, one technique that works is saying the car insurance has lapsed or the driving license has expired. But these techniques do not work if the person forgets that these documents needed for driving. Other techniques used are removing the keys, disconnecting the car battery or parking the car at a different place or even selling it. Many families in India use chauffeurs so that the car can be used for many family members through the day. Getting a driver may be a useful way to stop the dementia person from driving. It also ensures that the person can be taken for outings safely when needed.

Another area that requires alertness is smoking. Persons with dementia who smoke may set something on fire by mistake. They may not remember to extinguish cigarettes. Telling them does to smoke will not work. Smoking is an addiction and they will find some way to smoke, often by borrowing or stealing cigarettes. De-addiction techniques can be tried, but such techniques may be difficult for someone with dementia. The family can consider smoke detectors and fire alarms, depending on their assessment of the risk.

Remain alert on personal hygiene, medications, food and water. Dementia patients may stop their medicines and an existing health problem may worsen. They may not be eating enough food or drinking enough fluids. They may not be regular in their bath and cleaning up. Problems in these may be more difficult to note if the person with dementia lives independently, which is less likely in India. But even when in the same house, they may be neglecting some self-care areas–family members have to remain alert.

Remain alert on the mistakes in activities that can be dangerous. Cooking is one such example. Going for walks and then getting confused about the way back home is another. There may be others. See how the dementia person spends the day to decide which activities you must remain observant about. While caregivers may not need to be present all the time, there is need for enough checks and safeguards for activities where mistakes could be dangerous.

Early stage care can be planned and done effectively if the diagnosis is available. Without a diagnosis, the family may not realize that the problems are because of a medical problem and that they need more information and planning to support the person. Unfortunately, in India, diagnosis in early stage is not common. Symptoms are mistaken to be old age problems, stubbornness, personality changes, etc, and doctors are not approached. Or doctors may not give a correct diagnosis. Hopefully as awareness increases, more patients will get diagnosed early and care can also be planned better.

Persons with dementia can play a very active role in decisions around their dementia at the early stage, if they and the society around them understand and accept dementia. Even if the diagnosed person do not understand all the possible problems of dementia, they can participate and take decisions if they accept that they have symptoms like memory loss and that these may get worse.

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Care for mid stage dementia

Mid-stage dementia is often most stressful for caregivers. The dementia persons, too, are often distressed because they forget they have dementia, but they do not understand many things happening around them. They keep facing more problems and put themselves at risk because of changed behavior.

Understand that changed and risky behaviors are more common in mid-stage. Safety is a very important part of care. Persons who are still able to understand their dementia diagnosis and problems can try to explain their problems to the family members. They can try to trust and cooperate with the caregivers when they can. They can try to enjoy whatever activities they can still enjoy. This may not always be possible for them, because dementia creates too many problems.

Caregivers need to appreciate the difficulties of persons with dementia. Some persons may be able to cooperate and may be aware of their situation and risks. But many other persons with dementia will not be able to do so. They forget that they have dementia and so they do not understand why they are having problems. They may get very upset about their lack of control. Risky behavior is much higher. They may wander. They get disoriented and confused and agitated. Changed behaviors are common, and some are harmful to the dementia person and others. The persons with dementia are still mobile and more difficult to handle. Confusion and delusion cause several problems. They accuse people of stealing things that they have misplaced. Or they may remember an old watch they owned as a student, and on not finding it, accuse everyone of theft. They may hit people. They no longer recognize many people around them, and this is very frightening for them. Also, they may have other medical problems, but may not tell others about them so these medical problems remain untreated. Caregivers have to consider all these things while seeing how to plan and give care for mid-stage dementia persons.

Caregivers have to set up for mid-stage care and manage daily care. This includes making suitable changes at home and helping dementia persons with their daily activities and also keeping them safe.

Major changes may be needed in the home. Reality orientation tools may no longer work. The persons with dementia are mobile and can harm themselves. You must see which aspects of home setting can cause problems. Use creative solutions to keep the home safe and friendly for the person with dementia. Consider changes to reduce the chance of wandering. The person may need clothes that are easier to wear. Choices in the house may need to be reduced, and clutter removed. Observe what they find difficult or where they seem to be more at risk. Make adjustments accordingly. If hiring an attendant, adjust the home to give the attendant enough space, while also taking care of safety.

Use suitable ways to talk to the person with dementia, help the person, and handle changed behavior. Interactions have to be adjusted to the person’s needs and abilities. Care-related skills are very important now. You must know how to talk to and understand persons with dementia, how to help them, and how to handle changed behavior that seems harmful. If you have not learned these skills yet, you need to do so now. Changed behavior is very common in mid-stage dementia, and some of it may be harmful for the person and others.

Plan and maintain a suitable daily routine. A good daily routine gives the person with dementia a predictable way to spend the day. This makes life easier for them. Most persons with dementia feel much better if such a routine is used. A good routine has necessary daily tasks and also includes some meaningful and enjoyable tasks the person can do. It includes sufficient exercise, because exercise improves health and reduces restlessness. It should not be tiring, and it should not be boring.

You need to create a daily routine based on the abilities, likes, and dislikes of the person with dementia. As the person’s abilities will keep changing, this daily routine also needs to keep changing.

The family has to ensure care is available throughout the day if needed. By the time persons reach mid-stage dementia, they usually cannot be left alone. Even if they don’t need direct help, they may be at risk. A caregiver needs to be available nearby to prevent harm. This can be a problem because you may not be able to go out even for groceries or withdrawing money from an ATM unless someone else can stay with the person. Care planning includes ensuring that someone is available for supporting the person all the time. It could be a family member, a hired attendant, a volunteer or friend. Or you could use some support service like day care or respite care (these are not easily available in India).

Ongoing review is required because dementia keeps getting worse. This review is needed for all aspects.

Review how the person with dementia handles tasks and personal hygiene, etc. Keep adjusting support accordingly. Abilities will reduce as dementia gets worse. This affects the help persons with dementia need, and the support systems to change or improve. Review the medical aspects. Observe to see which tasks the person finds more difficult and what the additional risks are, and make changes. For example, is the person finding walking more difficult, do you need to add grab rails?

Review the medical situation. Existing medical problems of the dementia patient may have gone worse. Aids for vision and hearing may no longer be working well, and this may add to the person’s confusion. There may be new medical problems. There may also be side-effects of the medicines. Persons with dementia are usually unable to tell about their health problems, so be very careful. The person should stay under the supervision of a doctor who understands dementia and can also advise on other problems the person may face. You may need to decide on optional surgeries. For example, you may decide whether the person’s cataract should be operated now if you and the doctor feel the person will not be able to handle the surgery later.

Review whether major re-planning is needed because of decline. Change may keep happening gradually and you may not realize that the status has declined so much that you need major changes. This could be hiring an attendant, or using two attendants instead of one. Dementia may be getting worse and reaching the advanced stage when dependence is much heavier. Persons with dementia sometimes get worse after an infection or other illness or a fall and may end up becoming bedridden. Or you may find that care at home is becoming very difficult and may need to start looking for a suitable respite care. So, as a regular review, you need to see how severe the decline is, and plan. For example, you need to understand what late-stage care will require, so that you are ready for it.

Caregivers should understand the common problems faced in care and get help to reduce them Mid-stage care takes a heavy toll on caregivers, stressing them and tiring them completely. It requires major changes in their lives. By knowing the problems caregivers usually face, you can plan what you can do to reduce them or handle them better.

Caregiving can tire you physically. Persons with dementia need at least some help for most tasks. You have to make sure all tasks are done, and may need to guide the person or help them. For example, they may not be able to take a bath alone. They may forget to apply soap or forget to rinse the soap, or to dry off. You need to be ready for doing or supervising/ helping with a lot of physical support. Ask a physio-therapist how you can help the person with dementia without harming your own back or getting too tired.

maid may be accused of theft for something that the dementia patient does not possess

Caregiving can be difficult emotionally, too. Persons in mid-stage dementia often show difficult behavior. Outsiders often misunderstand the situation, or believe the dementia person’s complaints. Often outsiders are critical of the care, and suspect neglect. Hurtful comments are common. You have to be ready to face and handle difficult behavior. You also have to be emotionally ready to cope with unfair criticism, or reduction in friends.

Caregiving often affects job and finances of the caregiver. This includes changes needed to remain available to the person with dementia, and may require switching to a more flexible job or giving up work. It is also common for family income to reduce because of the expenses on care and loss of earning when some family members have to stop working to give care.

India does not have schemes to pay for the medicines and care of dementia patients, but you can check if subsidized medicines are available. Some income tax deduction for medical expenses incurred is available under section 80DDB. The income tax site has more information. Tax consultants can give more information. Note that only some types of doctors are authorized to give the required certificate.

Things you can consider for such typical problems include:

  • Learn and apply caregiving tips and techniques. Dementia care can be simpler if you understand dementia and its impact better and learn more effective ways to talk to and help someone with dementia. Learn the caregiving skills using books, videos, training classes; it is well worth the effort. For physical work, ask physiotherapists how to help the person without tiring yourself.
  • Look at all possible sources of support. Share the work and costs with family members. Get help from friends and others for errands or giving you company or emotional support, whatever they can help you with. Join support groups (online or in-person). Use counseling services if you feel stressed. To reduce workload, think of using attendants, and other dementia support and services.
  • Plan for self-care. There are many small things you can plan and do for yourself to reduce your stress and remain in better health. These are discussed in a separate section on this page.
  • Try to get some good, fulfilling moments during caregiving. The care work may seem less tiring if you can get at least some happy moments while doing the work. This is possible if you add some fun activities and relaxed times with the person with dementia in the daily routine and reduce your expectations about what the person can do.

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Care for late stage dementia

for late stage dementia, plan home nursing for bedridden patient

By this stage, the dementia person is dependent for all activities. The person is unable to explain things or understand others well, and has poor body coordination. Incontinence is common. Late-stage dementia persons often become bedridden. They fall ill more often and have more health problems. Some of these are because of dementia and some are because of other illnesses which don’t get detected as the persons cannot tell when they are unwell. Care for late-stage dementia needs very different type of planning and also knowledge of home nursing.

In India, families typically take care of persons with dementia at home, even at this stage. Care for late stage is an extensive topic, and requires adapting the home for such care as well as learning several additional skills, including home nursing. It is also emotionally draining as the caregivers can see the decline and the end is more visible. /p>

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Special attention to challenges posed by the COVID situation

Planning for care should also include precautions required to keep the person safe from the COVID infection and also ensuring that care remains suitable in the current constraints. The precautions and adjustments required may need frequent review based on the latest requirements and recommendations, and the implementation will depend on the stage of the person’s dementia.

Precautions at home are required on an ongoing basis to protect seniors from the COVID infection, like following the advice that they stay at home and also measures like use of masks, social distancing and hand washing to protect them from infection. This is very important because COVID is more problematic for seniors with dementia and also as COVID is very infectious and can be spread even by persons who don’t have any symptoms. Caregiver alertness is required continuously.

Persons in early stages of dementia may be able to understand about COVID, but may not always remember to take required precautions and may need to be reminded/ assisted for these.

When care starts including helping in daily activities, caregivers will need to be even more cautious about wearing masks and taking other precautions and also be more reassuring to the person as the person may find these changes odd and disorienting.

Medical care may be particularly challenging in an environment where families need to balance between the requirement to visit a doctor and the risk of visiting a medical facility. Telemedicine may be helpful, but has its limitations. Late stage care can be particularly challenging as it involves handling multiple medical problems and requires more healthcare services and tough decisions.

More discussions on detailed pages and an overview re COVID on Dementia Home Care, the COVID-19 infection risk, and Lockdown/ Unlock challenges.

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Special care aspects for younger onset/ early onset dementia

Some persons are diagnosed with dementia when they are less than 65 years of age. This is called younger onset dementia, or young onset dementia. (Another term in use is “early onset dementia” but this is generally avoided because some people use the term for the first symptoms
experienced with dementia at any age and that is confusing) A person with younger onset dementia may be in the 40s and 50s, or even younger. Most such persons have Alzheimer’s Disease or fronto-temporal dementia (FTD). The World Health Organization estimates that around 6-9% dementia cases are younger onset cases.

Care for younger onset persons is usually handled by the spouse, who is also at a busy and active stage of life. Young children, still studying or just starting their careers, may take on part of the work. Elderly parents, facing their own age-related problems, may also become caregivers.

Most dementia care discussions assume that the persons with dementia are retired and frail, and that such persons do not have many responsibilities. But younger persons with dementia are leading active lives, doing work, and handling many responsibilities. When they start facing dementia problems, they and the family have to also see how to reduce the work the person was doing, or hand it over/ close it. Above in this page, the discussion has covered care areas based on the dementia stage. For younger onset persons , you also have to pay attention to some more things because the persons are young and active.

If you have to support someone with younger onset dementia, please see the page: Plan care for younger persons with dementia.

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Care for the caregiver (self-care)

Caregivers are so busy helping the person with dementia that they often forget to take care of themselves. They keep working harder and harder and try to do all the work. Then the dementia gets worse and they are doing the work almost full time. They get physically, mentally, and emotionally tired. But they are not able to take breaks. They are confined to home. They get isolated from their friends and social circles. Because they are tired and overwhelmed, they don’t have the energy for the additional effort to take care of themselves. Persons around them may not know they need support. They may not know how to help.

As a caregiver, you must plan for self-care as early as possible, before you start getting tired and overwhelmed. Understand your role and how it will increase when the dementia gets worse. Think of what you have to set up for your self-care later. Planning for your own health and happiness is as important as planning care for the person with dementia. Tips on what you can do for this are discussed in detail in some other pages (links in the See also below).

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See also….

Resources/ references from Dementia Care Notes and related sites

Pages discussing some of the topics mentioned above:

Some relevant interviews on this site:

Some additional external references and links based on the discussion above

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