Dementia caregiving in the news (India)

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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. Selected entries provide a cross-section of recent caregiver experiences. They are arranged by their main theme.

Dementia care during COVID.

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

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

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

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

Care homes are also facing severe problems due to COVID. With many vulnerable residents living together, outbreaks are more likely and need special caution. In this news report, read about how 50% of the dementia persons in a Pune-based care centre were affected by dementia, along with other residents and also staff. Read: Pune: Mental health institute helps over 200 patients, staff recover from Covid-19

A detailed 4-part blog entry is available on the Alzheimer’s Disease International site describing care challenges when some residents and tstaff at a care home in Thrissur got infected with COVID, and how they coped with the situation. These can be read here: 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.

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Legal cases around care challenges, support, and conflicts.

Courts are sometimes approached by caregivers who want better support from systems (like in wandering episodes), want to be able to handle the finances of the person with dementia, or want to resolve conflicts with siblings and others around care of the person with dementia. A few such newspaper reports are given here as examples.

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.

Here are 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.

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Wandering.

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

In this section:

Police helps wandering senior return home.

An 85-year-old man suspected to be suffering from dementia had wandered off and 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.

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84yo locked in the bank locker overnight.

Krishna Rao, a diabetic who also had Alzheimer’s, had gone to the bank. When he did not return and the son was unable to locate him, he filed a police report. The police checked the CCTV and tried to locate him. Krishna Rao was finally found when the bank opened; he had been locked in the locker room by mistake. Read 84yo Alzheimer’s patient locked inside a windowless Jubilee Hills bank locker room for 18 hours sans food, medicine Opens in new window.

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84yo grandfather wanders off, police doesn’t realize he has dementia, and doesn’t give required help.

The wandering Narasimha Rao, 84yo was noticed a few hours after he left home, he seemed confused, and was taken to the police stations, But they didn’t realize he has dementia, and 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 “Like a ghost, he just wanders out of the house when you don’t even know or realize, and all of the sudden it’s just like, ‘Where’s dad?’” Opens in new window.

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Family approaches court to trace missing person.

A newspaper report of a case where the family approached the court to get an investigation done for their missing mother and found 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.

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

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

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Incidents of wandering where the person did not return.

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

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Some wandering incidents shared, some other care stories.

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

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

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

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

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

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

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

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

Divya Sreedharan is a Bangalore-based journalist. Her father, who lives with her mother, has dementia. Divya has shared her personal experiences related with dementia and wandering in her articles, and is deeply concerned about this problem. In an article in April 2014(Missing in mind (and body) Opens in new window), she again talks of her personal experience and also discusses the wandering problem, use of bracelets in India, and such topics.

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 (needs a premium account).

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

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

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

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

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

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Especially challenging care situation: Early onset dementia.

When a younger person gets dementia, there are many 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.

In this section:

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

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

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Especially challenging care situation: elderly caregiver.

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

In this section:

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

In this first-person article, a retired English professor describes her husband and the impact of dementia in their lives. Fifty years married, she goes down memory 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.

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

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

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

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

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

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

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

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Caregiver experience sharing around 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.

In this section:

Daughter describes how her caregiver role resulted in her getting anxiety attacks.

In this personal essay, Varsha Balakrishnan, 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. Read the first person account here: Caregiver’s burden: The silent stress no one talks of Opens in new window.

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Care for the caregivers.

This news report includes experience sharing by several caregivers, where they talk of the challenges faced while caring and also about the impact of care 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

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

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

In this section:

A son describes his father’s dementia and his stay in an asylum in Kolkata.

In this narrative, a son describes 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.

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

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

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Home Care or Institutionalization decisions, and caregiver guilt.

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

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

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

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

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

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

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

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

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Improving quality of life even if abilities do not improve.

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

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“Remote” caregivers, arrangements, and guilt.

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

In this section:

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

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

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

Eshwar Sundaresan, a Bangalore-based writer, has written a detailed blog entry about his father’s dementia and how it has changed him in some ways and not in others. He was living with his parents, but then his mother decided to move with his father to a place she was more 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. This introspective piece is available at: They Understand Only Love Opens in new window.

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

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Caregiving from Another Continent: some caregivers share experiences.

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

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Diverse care situations, symptoms, challenges, introspection, comments.

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

In this section:

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

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

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

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

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

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Many caregivers share their experiences.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In this section:

Sharing along the dementia journey: Nishi Pulugurtha’s blog.

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

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

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

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

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

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Sharing by Ekta, once a teenage caregiver.

Ekta and her sister were thrust into a care role when they were still students, because their mother had young-onset dementia. Ekta has shared her experiences through various blog entries and interviews. Her online sharing includes blogs with multiple entries on her experiences, both as a caregiver and daughter, and also as a volunteer. She has also included caregiver stories from friends and relatives. Her blogs are available at (older blog) careforcarers.wordpress.com Opens in new window and some later entries are in her more recent blogs fromoutsidethemall.wordpress.com Opens in new window (look for “dementia” or other related tags). For example, under or “memoirs”: Entries tagged with “mother” Opens in new window and Entries tagged with “memoirs” Opens in new window

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

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

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

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