This page provides links to some online news reports, articles, and personal essays and blogs that include dementia caregiver stories from India. They provide an insight into real-life experiences of dementia situations here, the challenges faced, what families do, problems due to lack of information and poor awareness in society, and the use or limitations of various support mechanisms, etc. The entries have been selected to provide a cross-section of experiences, and arranged by theme.
Selections by theme:
- Theme: Special challenges faced in dementia care during COVID.
- Theme: Legal cases around care challenges, support, and conflicts.
- Theme: Wandering.
- Theme: Early onset dementia.
- Theme: When the caregiver is elderly.
- Theme: Impact of care on caregiver health.
- Theme: Decisions and experiences around using care homes, day cares, and attendants.
- Theme: “Remote” caregivers, arrangements, and guilt.
Covering diverse care situations and multiple themes:
- Diverse care situations, symptoms, challenges, introspection, comments.
- Personal blogs that span the dementia experience, including joys and sorrows, challenges, loss and bereavement.
Note that some links may only be available if you are a free or paid member/ subscriber.
Though COVID is no longer actively considered an issue, the care challenges faced during COVID due to the infection and lockdown/ restrictions illustrate how dementia care is more affected by such extreme situations. For example, home confinement during lockdown increased restlessness and danger of wandering. In an incident in Kolkata, a 91 years old senior with dementia, tired of the confinement, stepped out of the house and was found dead soon after: Alzheimer’s patient found dead on road in Calcutta Opens in new window. Expert comments around this incident are at Alzheimer’s, dementia patients hit hardOpens in new window.
Wandering during COVID/ lockdown created special problems. In Mangalore, a senior with dementia, unaware of COVID, lockdown or e-passes, drove around till he was stopped and questioned, and was agitated when asked why he was outside. The police booked him for obstruction, see Mangaluru: Senior citizen with ‘dementia’ booked for obstructing policemen during lockdownOpens in new window.
Families also faced problems due to closure of day cares. See these articles from Chennai, COVID-19: Challenging times for caregivers Opens in new window and Bengaluru Dementia patients, caregivers try to cope with locked down environment Opens in new window.
Care homes faced severe problems during COVID with many vulnerable residents living together and outbreaks. 50% of the dementia persons in a Pune-based care centre were affected by dementia, along with other residents and also staff: Pune: Mental health institute helps over 200 patients, staff recover from Covid-19. A detailed 4-part blog entry on the Alzheimer’s Disease International site describes care challenges when some residents and staff at a care home in Thrissur got infected with COVID, read Life in a dementia care centre during India’s second COVID-19 wave: Part 1 Opens in new window, Part 2 Opens in new window, Part 3 Opens in new window and Part 4 Opens in new window.
Caregivers sometimes approach courts for better support from systems (like in wandering episodes), or to be able to handle the finances of the person with dementia, or for resolve conflicts with siblings and others around care of the person with dementia.
Some newspaper reports of cases where families were given control under various legal provisions: FPJ Legal: Bombay High Court appoints husband to deal with properties and finances of wife as she is in a ‘vegetative state’Opens in new window and Mumbai: Daughters made guardians of mom with dementia Opens in new window and Mumbai: Dementia-hit woman’s daughters appointed guardians Opens in new window.
A newspaper report of a case where the family approached the court to get an investigation done for their missing mother: Missing for 1 year, elderly with Alzheimer’s died in rail accident: SIT to HC Opens in new window.
Two newspaper reports around a court case between siblings around care and property disposal of a mother with dementia: SC allows daughters to take care of their 89-year-old mother suffering from dementia Opens in new window and Supreme Court restrains son from dealing in properties of 89-year-old mother suffering from dementia Opens in new window.
Problems may be faced if the caregiver passees away while the person with dementia is under care in a hospital. This case of a doctor with dementia admitted in Moolchand is an example of such a situation: High Court Seeks Delhi Govt’s Reply On Moolchand Hospitals’s Plea For Payment Of Rs 52 Lakh Bill Of Alzheimer Patient Opens in new window.
Courts also grant guardianship based on the case even where a legal framework may not be sufficient, such as HC appoints daughter as legal guardian of woman suffering from Alzheimer’s disease Opens in new window.
Wandering is a major problem faced in dementia situations. The selection below includes situations where the wandering person was located fast, or after a while, or never located. We see the impact of alert persons who help the person return home, and also of situations where no one noticed the person who then died or was never found.
A 85 year old senior with dementia wandered off; the police helped him return home. The man was found 40 km away from home by an alert police constable who noticed that the old man was tired and crying and unable to respond. They located a sheet in his pocket with contact details, and after a few tries reached one of the sons and were able to send him back home. Read Reunion tales Opens in new window.
Krishna Rai, an 84yo diabetic with Alzheimer’s went to the bank, but was locked in the locker room by mistake. When he did not return from the bank, the son, unable to locate him, filed a police report. The police checked the CCTV and tried to locate him. The senior was finally found locked in the locker room when the bank opened. Read 84yo Alzheimer’s patient locked inside a windowless Jubilee Hills bank locker room for 18 hours sans food, medicine Opens in new window.
Narasimha Rao, an 84yo grandfather wandered off, but though he was noticed and taken to police stations, the police didn’t realize he has dementia, and didn’t give required help.They just thought he was just lost, and gave him directions to a bus stand. At the time of the newspaper report, four days later, he was still missing. Read ‘He is old. He has Alzheimer’s and it is so hot outside’; A grandson’s desperate search for his missing grandfather Opens in new window.
On approaching the court to trace their missing mother, the family learnt that she had died a year ago in a train accident: Missing for 1 year, elderly with Alzheimer’s died in rail accident: SIT to HC Opens in new window.
Social media was used to spread the news of a wandering person, alert citizens spotted the person, and the person was returned home safely. This case shows that the Internet can provide a fast and effective way for helping get the person home if our society is alert and willing to act and use the power of the social networks. Read a story about such action: : Netizens help family in Delhi trace Alzheimer’s patient Opens in new window.
Article with examples where persons who wander are never found. Read stories from families where the missing persons are still missing, and also interviews and opinions of experts on the situation of awareness and support in India for such problems. Read the article at: Where’s my home? Opens in new window
Read about multiple wandering incidents and other care stories in this news article with several real-life stories, along with some expert interviews on dementia, awareness, support, and other aspects. In one incident, a woman with dementia wandered off sometime in 2005 and was found 10 years later, 2000 kilometres from her village: Care to remember: The challenges of caregiving for Alzheimer’s patients Opens in new window.
93 year old Sampath Kumar,a person with dementia, who went missing during his morning walk, was helped and restored to the family thanks to the kind and timely action of a scrap dealer. Sampath Kumar was found unconscious by the helpful scrap dealer: Missing 93-year-old found 20km from home Opens in new window.
After ex-navy officer Ponnaiyan went missing, three very tense days passed before the desperately searching family located him. He had apparently traveled 35 Km on his own. The son Paramananda describes this experience in detail in his blog, including how the family pulled in all the resources and contacts they had for the intense search. The article, reproduced by Citizen Matters, Bangalore, can be seen at Finding my lost father in Bengaluru Opens in new window.
Bangalore-based journalist Divya Sreedharan has been sharing her concerns and personal experiences around dementia wandering. In an article in April 2014(Missing in mind (and body) Opens in new window), she talks of her personal experience around her father’s wandering, and also discusses the wandering problem in general, use of bracelets in India, and such topics. In an earlier article in 2011 in The Hindu (Lost and found in 17 hours Opens in new window), she describes one such episode in detail.
In November 2013, alert residents of an apartment complex in Bangalore restored an elderly person to his home. The elderly person seemed to think he was a resident in their complex and was having problems remembering his identity and personal details, and they were able to calm him and help him and return him to his family. Alertness of the cops also helped. Read the story here: Apartment residents help unite dementia patient with family Opens in new window.
In a tragic case, a senior wandered off in spite of the arrangements made at home, and was found dead five days later. The daughter-in-law describes how how he was found in a slum five days later, dead of hunger, thirst, and dehydration, and how no one seems to have helped him Read the article here: Daddy could have lived, if only Opens in new window.
When a younger person gets dementia, there are many special challenges faced by the person as well as the family. The person is still in a very active phase of life, still earning or handling major responsibilities, the savings are low, the children young. Support is even lower for young onset cases, as most support is designed for older persons. The selection in this section focus on this aspect ofcare challenges.
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, archived copy). They provide a good insight into 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, 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.
(Also see the entry for Ekta below, for an extensive blog of a young caregiver for someone with early-onset dementia)
Read about situations where the caregiver is elderly (in their 70s, 80s, and even 90s) and looking after a spouse with dementia, or, in one case, looking after a child with dementia.
A retired English professor describes care for her husband (a person with dementia) and the impact of dementia in their lives. Fifty years married, she goes down memory lane to share their earlier years together and describe the sort of person he was, the setting of the symptoms, the state he is now, and also some care related aspects: Life after oblivion Opens in new window.
A wife, in this article written anonymously, talks about how her husband, once a very active person, began declining because of dementia. She describes how she tries to take care but how it is not easy. She describes her stress and sense of hopelessness in some detail: Confessions of an anonymous woman: For better, for worse Opens in new window.
92-year old Shefali Choudhury describes how, for several years now, she has been the caregiver for her daughter, Dipika Basu. Deepika, in the terminal stage of Alzheimer’s, can no longer communicate or interact. In this September 2010 report in The Telegraph, Shefali describes how her daughter began showing dementia symptoms in her fifties,and how she has been cared for all these years. Read the report here. Opens in new window. More description of the case can also be read in a December 2009 article here: Experts warn of dementia epidemic. Opens in new window.
85-year-old brigadier (retired) SP Bhattarcharjya, caregiver for a wife with dementia, describes how she deteriorated and how difficult it was for him to adjust to this reality and be her. “I could not accept that Alzheimer’s could happen to my wife a person who was into quizzing, was an avid reader and was full of life,” he says. Read: Article by 85-year-old brigadier (retired) SP Bhattarcharjya on the care of his wife Opens in new window.
Theme: Impact of care on caregiver health.
Caring for someone with dementia is often extremely stressful, and may affect the physical and mental health of the caregiver. This selection focuses on accounts where caregivers share this aspect.
Being a caregiver made Varsha Balakrishnan prone to anxiety attacks. In her essay here, Varsha, the primary caregiver for a mother with dementia, describes how she did not realize how much her caregiving was affecting her till she suffered an anxiety attack: Caregiver’s burden: The silent stress no one talks of Opens in new window.
Several caregivers share experiences about the challenges faced in care and the impact on health, etc. They talk about burnout, the need for others to step in, the need for counselling, the need to use helpers. Read the report here: Who Cares for Caregivers? Opens in new window
Support for dementia care at home is very difficult to get. This selection has articles describing situations where such services and facilities are used, and some caregiver accounts about decisions to place a person in a care home.
A son describes his father’s dementia and his stay in an asylum in Kolkata. He tells us how his father, who had dementia, moved to Kolkata but was never happy there. He describes his meetings with his father, the decline, the moments of confusion and of connection and the mother’s decision to move the father to a mental asylum in his final years. Read ‘Like a ghost’: St. John’s man recalls his father’s rapid decline from Alzheimer’s disease Opens in new window.
Carol D’Souza, a consulting psychologist, recounts her mother’s advancing dementia and how she and her family made peace with the agonizing decision to put her in a care home. She shares her mother’s dementia onset and how it impacted everyone’s life. She talks of how tough the care became, and how her mother’s changed behavior becoming very difficult to handle. Finally, she and her siblings start looking for a dementia care home as the best way for things to improve for her mother as well as for her own family: I never wanted my mother to go into a dementia care home Opens in new window.
A young man describes the conflicts and anger and guilt as his family members differed over some hard decisions taken when they were unable to handle care at home for the person with dementia. The decision to opt for institutionalised care often involves a lot of guilt, even though there are many reasons that may be required. Home Care or Institutionalization Opens in new window.
A wife describes her decision to place her (early-onset dementia) husband in a care facility. The caregiver story is towards the end of this news article, where Anupama, 54 years old, talks about her 55 year old husband who had started experiencing problems since the age of 44. She shares the impact on the family and how she had to decide to place him in the facility, and the difficulties faced. See: Dementia costs soaring; govt unfazed (Anupama’s story is towards the end of the article) Opens in new window.
Several stories sharing real-life problems and experiences with getting trained attendants and arranging home care: Many caregivers talk of the practical problems and explain the arrangements they made for the care. The article explains how, in India, there is barely any support and hardly any trained persons for home-care, making things very difficult for family caregivers. What Caregivers Face While Taking Care of Loved Ones With Alzheimer’s or Dementia Opens in new window.
A 16-year old day care volunteer shares her learning from interactions at a day care in Kolkata. Minori Parelkar, aged 16, started her volunteer work with many assumptions about the problems persons with dementia face, assuming they were like her occasional memory slips. She was unsure about how she would interact with the persons at the day care. She shares her experiences and insights gained across her interactions. Minori’s grandfather was also diagnosed with dementia, and she shares how these have impacted her views and interactions. “Remember me?” (PDF file, article on page 8) Opens in new window.
Experience sharing at a support group meeting is described in this report from DNA, which reports on one such meeting held in Bangalore in July 2010. caregivers describe the challenging behavior of patients and the social ostracizing the family faces. Volunteers attending these meetings get to understand the situation better and to see how they can help. Read the coverage here. Opens in new window
In an extensive article on dementia in India, the Telegraph includes dementia patient experiences and explains that quality of life can be improved even if abilities cannot. With a little help from my friends Opens in new window.
In many families, the children live far away from their parents and are unable to relocate when a parent gets dementia. They try to support from a distance, but face many difficulties and also experience helplessness and guilt. This section focuses on such experiences.
There is a real danger of physical and financial abuse of parents living alone by their paid caregivers, such as shown in this case: How India-based Elderly Parents of Indian Americans are Becoming Targets of Abuse Opens in new window.
Daughter Divya describes her father’s dementia, her mothers caregiving, her attempt to support her mother from a distance, and her guilt. Divya is a journalist who often writes informative as well as personal articles about dementia. She combines useful information on dementia, authoritative quotes and excerpts, and personal experiences in this article. She talks of her helplessness about the limited help she can give from a distance. The mind never mattered more Opens in new window.
Eshwar Sundaresan, writer, has a detailed blog entry about his father’s dementia, his mother’s caregiving, and lessons. Eshwar describes how his father’s dementia has changed him in some ways and not in others. He was living with his parents, but then his mother decided to move with his father to a place she was more comfortable with, making Eshwar a remote caregiver. He writes about his mother’s caregiving, and her inspiring strength, and about life-lessons he has learned from his own role in supporting his mother in the caregiving. They Understand Only Love Opens in new window. In November 2010, Eshwar’s interview to Dementia Care Notes was published using a pseudonym, “Varun” ( to retain his privacy) but he is now willing to acknowledge that he is “Varun”. See: His condition affected every sphere of my life: a son talks of his father’s Alzheimer’s. Looking at the two descriptions (the September 2013 blog entry and the November 2010 interview) gives insight into how he integrated his experience in his life-view over time.
Some caregivers living outside India share experiences of how they are trying to support ageing parents in India remotely – using daily phone calls, Skype, and frequent visits. They talk of how they monitor the health of their parents and try to train/ supervise the help using phones and visits. They talk about the guilt they face. Caregiving From Another Continent Opens in new window.
Some articles of experiences shared by caregivers span multiple aspects and give a broader perspective of the situation and challenges. They provide a cross-section of how dementia presents itself, of various caregiver challenges, and how care affects them. Some are personal pieces where a caregiver talks of their care journey and its impact; others are interviews of multiple caregivers, sometimes including data on dementia and resources and comments by experts or volunteers.
Even in 2023, the challenges faced in dementia care and problems getting support remain. Multiple caregivers share experiences spanning their care journey in this article , and experts add their comments and concerns about the current state of dementia care in India and the lack of specialists and care homes: Why it is a lonely journey for dementia caregivers Opens in new window.
Nine caregivers talk about their experiences of symptoms, diagnosis, care challenges, and heartbreak in this detailed article at scroll.in. They talk of personal experiences of seeing a loved one decline, of the initial symptoms and how the situation worsened, of their heartbreak and the practical difficulties faced in getting a diagnosis and providing care. This exceptionally detailed and useful article is at: Living with dementia: The searing ache of being a family caregiver in an Indian city Opens in new window.
Two caregiver stories about caregiver experiences and their search for answers and company are shared in The New Indian Express. the article describes the changed behaviors, the family’s response, and the search for information and solace. A Look into Life of a Dementia Caregiver Opens in new window, describes several incidents to explain how the behavior changed and how caregivers tried to understand, adjust, and care. Caregivers Find Solace in Virtual World Opens in new window, is about how some caregivers looked for information and company online.
Several caregivers share their dementia care related challenges and experiences and what they did in this detailed Livemint article. and experts also give the context of dementia and their suggestions. Read: World Alzheimer’s Day: A caregiver’s struggle Opens in new window.
Prem Panicker’s mother had dementia. After her passing, he has made some blog entries wabout her dementia and of the passing. He describes how her dementia grew, how the family started finding out what it was, the challenge of acceptance, and how such problems had been there with his grandmother and her mother before that, only in those days there was no name for it. Prem Panicker’s blog entries on the dementia experience Opens in new window
Annie talks about her father Jacob, an engineer, who had been the carer for the family and children for years, but who now needs care because of his dementia. She talks of the changed behavior, and how the family took time to adjust to the role reversal of this new reality. She talks of her emotions while watching her father deteriorate, and how they are managing now. Read the article here: Confronting a devastating disease Opens in new window.
Alanna Shaikh, whose father suffered from Alzheimer’s for a decade, is keenly aware that it can run in the family and doing all she can to prepare herself for the worst. She shares her thoughts in this first person account: Preparing for Alzheimer’s Opens in new window.
Poverty, isolation, depression, and dementia: a tragic story of a caregiver daughter and her mother. In December 2010, Express Buzz published a story describing the state of a daughter looking after her ill mother. The daughter, who had been able to get a college education because her mother had worked as a labourer to earn money, was unable to take up a job because her mother’s care occupied her all day and night. The mother and daughter lived in a thatched hut, and the only money they got was from persons and organisations that understood their plight. Read the story here: Can society help her? Opens in new window. A follow-up story appeared in February 2011, again in Express Buzz, to provide a tragic update. Read it here: The burdens of care Opens in new window
Personal blogs that span the dementia experience, including joys and sorrows, challenges, loss and bereavement.
Some bloggers have multiple entries with several personal stories around how dementia affected the person and the family and described their lives with dementia. These include happy and sad moments, events as they happen, and reminiscences, and span from the undetected initial dementia to the dying and death, and even their life after the person with dementia died.
Nishi Pulugurtha’s blog: Nishi Pulugurtha’s mother had dementia. Nishi teaches at Brahmananda Keshab Chandra College and is also a poet, writer, and reviewer and also writes about Alzheimer’s Disease. Multiple blog entries of her around her mother’s situation, her feelings as the daughter and carer, and dementia in general can be seen on the Café Dissensus site, and can be located using related tags, such as Alzheimer’s Opens in new window and dementia Opens in new window.
Sangeeta Murthi Sahgal’s blog on her father’s Parkinson and dementia journey: She shares stories of his life, right from childhood till his end – tales showing how his life and that of his caregivers changed as the disease progressed. The blog spans many years, including memories of years before the illnesses, providing a perspective of changes that Parkinson’s and dementia bring and the impact on the family. See Parables of a Parkinson’s Patient Opens in new window.
Anis Hoda’s blog on final stages of dementia: This touching and highly personal blog has around 50 entries made by son, Anis, and his wife, Mariam, about his mother, who had vascular dementia. They share small and big incidents related to the mother’s life, things she did, memories, incidents, and touching details of the decline of the mother’s state and her passing away. The blog is here: My Mother and I Opens in new window. In his introduction to the blog, Anis says, “My mother had a Phd in Chemistry and was Head of Chemistry Department until she retired about 4 years ago. Now she only draws straight lines when asked to write the alphabets.”
Ekta, once a teenage caregiver, shares her personal experiences, around care, and other thoughts on dementia: Ekta and her sister were thrust into a care role when they were still students, because their mother had young-onset dementia. Ekta’s online sharing includes blogs sharing experiences – as a caregiver and daughter, and later a volunteer. Caregiver stories from friends and relatives are included. Her blogs are available at (older blog) careforcarers.wordpress.com Opens in new window and some later entries are in her more recent blogs fromoutsidethemall.wordpress.com Opens in new window (look for tags like “dementia”, “memoirs”, “mother” etc.). An interview of Ekta is also available on this website, at A case of early-onset Alzheimer’s Disease.
Swapna Kishore’s personal blog with 200+ entries spanning the dementia journey and thoughts on ageing: Swapna Kishore, a dementia caregiver for well over a decade, blogged about her mother’s dementia and the care experiences of over a decade, such as diagnosis challenges, learning caregiving skills, coping with criticism, and making adjustments to handle her mother’s care. She also shares her experiences as a volunteer in the dementia domain. The blog has over 200 entries, with menu options for ease of access; see it at: swapnawrites.wordpress.com Opens in new window.