Voices: Caregiving in the news

Indian newspapers and magazines have started reporting more news of dementia (especially on days nearer major events like World Alzheimer’s Day or conferences focused on dementia/ Alzheimer’s). Some news articles include descriptions of caregiver experiences.

This page provides links to select media articles available online that include experiences related to caring for a dementia patient in India.

A 16-year-old volunteer shares her experience and learning from interactions at a day care in Kolkata.

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

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

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

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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 . A quote:

He was prone to over-eating, with a weakness for sweet treats. He also lost the ability to “use” money, or distinguish between currency notes of different denominations. Today, his grasp on reality is tenuous, he has hallucinations, he is disoriented about where he is, what he is doing. He also has no concept of time or night and day.

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

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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 . A quote:

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

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A wife describes her decision to place her 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) . A quote:

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

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A wife’s account of turning caregiver to her spouse affected by dementia.

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

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

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Two caregiver story articles 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 , describes several incidents to explain how the behavior changed and how caregivers tried to understand, adjust, and care. A quote:

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

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

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

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A 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 . A quote:

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

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

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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 . A quote:

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

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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? . A quote:

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

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Some wandering incidents shared, some other care stories.

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

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

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

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

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

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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 .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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Caregiver profiles of three caregivers, in a two-part article.

In this two-part article, the journalist describes the situations and challenges associated with three situations. The first situation, the personal story of the journalist, is about her mother’s coping as a caregiver while the journalist daughter tries to support from a distance. (link: MindSpace: The incredible loneliness – and strength- of being a caregiver . An excerpt:

To be brutally honest, my sister and I don’t really know what it is like to live with my father—what it is to be constantly alert (so he doesn’t slip out the front gate); what it is to hide the food/edible items in the house, especially sweets, (he keeps eating if he finds any); what it feels like to fall sick and not have anyone around to nurse you; what it feels like when your spouse doesn’t care or remember your birthday, your wedding anniversary. Only my mother knows, because she lives with my father.

The second article describes two other situations, one of a career woman trying to balance caregiving with her career, and another of a caregiver whose mother has now passed away, but whose caregiving journey caused major family rifts, and how this woman is facing problems coping with her grief, trying to resume an active life, and wondering how to handle the rifts caused in the family during her years of caregiving. (Read the second article here: MindSpace: The 24/7 week – Having a career and being a caregiver .An excerpt:

Elder care, like child care, she stresses, comes at the cost of lost opportunities in career advancements, travel, social engagements, alone time, and even relationships with partners. But children grow up; teething troubles are temporary. Illnesses such as kidney disease and complications from old age are not. There are no happy milestones here, she says.

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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 . An excerpt:

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

(View an interview with Parmananda’s family directly on Youtube or see it in the player below)

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

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

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

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

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

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A 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, Swapna Kishore describes her experiences as a caregiver 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) . An excerpt:

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

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A 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 . An excerpt:

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

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A daughter 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 . An excerpt:

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

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

In this article, a daughter describes how her father 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 . An excerpt:

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

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A person with dementia talks of how she feels the stigma of dementia.

We rarely get to hear voices of persons with dementia in India. In this article, we read about how Maloti Ray feels about her diagnosis and its impact on her life. Read this article here: Stigma syndrome .

She lives confined to a corner of her apartment. She hasn’t gone out in months and spends most of her time humming her favourite songs. “This isolation is worse than death, ” she says.

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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 . A quote:

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

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

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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 . A quote:

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

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

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An early onset patient’s story.

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

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

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A post-graduate in chemistry develops dementia.

Some caregiver stories, including the story of a chemist who developed dementia, are shared in this article from The Hindu, When past fades into a world of nothingness . A quote:

Paulose is brainy by any standards. He has a post-doctoral degree in chemistry from the U.S. But today, if you ask him what his thesis was, a blank stare from under the snow-white bushy eyebrows is what you get.”

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A family’s story of a person with Parkinson Dementia Complex.

This Hindu article, A caregiver speaks… , describes the experience of the family members of Prof. Venkatachalam, who suffers from Parkinson Dementia Complex. A quote:

But gradually, we began to notice other changes. He was withdrawn, wanted to be left alone, he would just sleep, wake up, bathe…He was uncharacteristically indifferent to the happenings around him.

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A tragic story of caregiver daughter and her mother, who had Parkinson’s and dementia.

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?

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

Also read Swapna Kishore’s blog entry commenting on how we, as members of society, need to consider our responsibility towards dementia caregivers’ stress and isolation.

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Early-stage dementia and the inability to handle money and contracts.

A report published in Financial Express in Nov 2010 described a situation where a lawyer’s early dementia was detected because he stopped paying checks and tracking his financial commitments. To quote:

New research shows that one of the first signs of impending dementia is an inability to understand money and credit, contracts and agreements.

The article underlines the need for families to stay alert about such symptoms, and to also financially safeguard against problems caused by them. Read the article: Money woes early clue to Alzheimer’s

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Caregiving from a distance.

A caregiver living overseas describes how, in spite of living overseas, this caregiver and another sibling living overseas are better informed of the status of the parent in India than a sibling living near the parent.

In the situation described, the local sibling displays a combination of indifference and denial towards the parents’ health conditions. Caregiving is being handled by the overseas siblings who stay in touch with the parents and coordinate the required support. The overseas caregivers make frequent phone calls home, and visit very often. They juggle this along with their lives overseas, and this proves to be very difficult, given their jobs and commitments.

They are managing it…so far. Read the description here . (search for overseas_caregiver)

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An instance of an aggressive dementia patient.

An article published in The Hindu in September 2010, describes how 67-year-old Shalini Rao (not her real name) used to become aggressive, abusive and violent every time she used the toilet, and what the reason turned out to be. Read the article…

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When an elderly woman acts like a coy girl.

In this Times Crest article, read about a 70 year old woman who powders her face and giggles because she thinks the “boy’s family” is coming to see her. Also, other such narrations and some expertspeak. The excerpt of the article is available free: . Vanishing Mind To read the full article, you need to be registered with Times Crest (the registration is free).

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An engineer with Alzheimer’s.

Rangaswamy, a retired senior engineer in the Indian Railways, is suffering from Alzheimer’s disease. He began showing the symptoms around five years ago, and began exhibiting challenging behavior the family could not handle. He is now in the advanced stage and being taken care of at a long-term stay facility in Bangalore. According to this report, the retired engineer now finds it difficult to build a house with some plastic blocks, but he keeps trying. Read about him The engineer in him stands up to Alzheimer’s disease

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

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

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

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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 .

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Caregiver experiences from multiple cities in India.

In a detailed article on dementia and related resources in July 2010, Livemint.com published caregiver experiences. A quote:

“We have to be careful of what we’re watching on TV because to him there is no difference between reality and fiction,” says Setlur, who has been a caregiver since 2005.

Read the article here.

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Dementia day care, pet therapy, yoga, comfort in Mumbai.

At a dementia day care centre at Grant Road, Mumbai, patients listen to music, play with pets, do yoga. A report on this centre’s activities described the methods the centre uses to make the patients comfortable and help them socialise. Read the report here: At this dementia day care in Mumbai, pets keep seniors on their toes

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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 .

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Some caregiver experiences from Mumbai.

DNA Mumbai, in this September 2010 article on dementia resources in Mumbai, also describes caregiver experiences. Read the article here.

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Experience sharing at a Bangalore 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.

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Strange behavior leads family to seek diagnosis.

In this June 2010 article in Times of India, read about the strange behavior that led a family to seek a diagnosis for an elder. Experts also explain how diagnosis is poor in India because dementia is confused with old age. To quote:

When asked, around 90 per cent of relatives in Latin American countries said that they did notice a memory problem in their elderly parents or grandparents, which could mark the early onset of dementia, compared to only 25 per cent of Indians who said so.

Read the article: Do I Know You?

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Page/ post last updated on: April 28, 2016