Media coverage of dementia and care situations can provide insight in the lived experiences and ground realities faced by families coping with dementia. This page is organized by themes and provides a curated set of illustrative examples per theme drawing on coverage from India (news reports, features, and caregiver blogs); it is not a comprehensive archive of dementia-related news coverage. Note that while some of these stories are older, the situations and challenges described remain much the same.
As this page draws on what is published, it has a skew toward metro cities, middle- and upper-income families, and situations people are willing to discuss openly. Also, topics like elder abuse, institutional neglect, financial exploitation, caregiving in under-resourced settings — are correspondingly thin or absent on this page, not because they’re rare, but because they’re rarely told as personal stories. Some research-based papers and reports on such aspects may be available on our page Dementia reports, studies, and policy news Opens in new window, which also includes suggested relevant standards. Other resource pages in this “Voices” section may also be helpful.
Selections by theme:
- 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.
- Theme: Special challenges faced in dementia care during COVID.
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.
Theme: Legal cases around care challenges, support, and conflicts.
In some situations, caregivers need to use the legal system to get clarity and control over some essential aspects for care, or to resolve conflicts with other stakeholders.
One major category of such situations is when caregivers approach courts to assign them guardianship and financial control. This usually involves proving that the situation requires such a step, and that the person(s) asking for the guardianship are the appropriate persons and that the suitable provisions in various acts be applied. No objection certificates from other possible guardians may be involved, or there may be a conflict between various alternate guardians that the court needs to resolve, including considering approaches like changing the living arrangement of the care receiver with various caregivers. Some articles/ reports around this are: 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. Also, a situation where the wife was unable to look after her husband and so, Bombay HC Appoints Son Of 71-Yr-Old Alzheimer’s Patient As His Legal Guardian Opens in new window. And another, where the court reunited an elderly couple : Kerala HC reunites 92-year-old with wife after son keeps them apart Opens in new window. A situation where guardianship was granted even where a legal framework was not sufficient: HC appoints woman guardian of mother with Alzheimer’s Opens in new window. Sometimes courts have to resolve conflicts 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.
Courts are sometimes approached to get better support from various governmental bodies. Examples where courts were approached Missing for 1 year, elderly with Alzheimer’s died in rail accident: SIT to HC Opens in new window, or a hospital approaching for bill payment for a patient’s care when the caregiver has passed: High Court Seeks Delhi Govt’s Reply On Moolchand Hospital’s Plea For Payment Of Rs 52 Lakh Bill Of Alzheimer Patient Opens in new window.
Courts may also be approached to decide whether someone who has dementia is required to physically appear in court, or how the accused having dementia affects the case as the person may have been cognitively impaired. For court appearances, in some cases, the ruling may require the person to appear (a Cuttack High Court case here Opens in new window) but another, from the Kerala High Court, postponed the trial of a 74-year-old with Alzheimer’s.(Alzheimer’s Falls Under Intellectual Disability, Accused Entitled to BNSS Safeguards Retrospectively : Kerala HC Postpones Trial Opens in new window). In another case, after confirming that the accused had dementia, a Court cancels case against ex-professor with dementia for sending obscene message Opens in new window.
Theme: Wandering.
Wandering is recognized as a major problem faced when someone has dementia. Many families may not understand the seriousness of a loved one’s dementia till an episode of wandering; in others, even with the best of planning and precautions, the person may wander off. In some cases, the person is located soon, in others, it may take hours, days, even weeks. The person may be injured or dead, and sometimes the person is never found. The curation below illustrates a range of such situations.
Better awareness around wandering in society and in the police force can help restore the missing persons, poor awareness may make them slip away even if noticed. A 84yo grandfather who was noticed and taken to the police station, but they didn’t realize he had dementia, just gave him directions, and four days later, he was still missing: ‘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 the other hand, timely action of a scrap dealer helped restore an unconscious 93 year old man to his family: Missing 93-year-old found 20km from home Opens in new window. An alert policeman noticed a tired 85yo senior who was crying and had wandered 40 km from home, and the contact details in his pocket helped reach one of his sons: Reunion tales Opens in new window. Alert residents of an apartment complex in Bangalore and helpful cops restored an elderly person to his home though he was unable to remember his identity and address: : Apartment residents help unite dementia patient with family Opens in new window. A journalist whose father had dementia has shared her concerns and personal experiences around dementia wandering and the role of awareness and support: Missing in mind (and body) Opens in new window and Lost and found in 17 hours Opens in new window.
People don’t often realize how far someone may wander because of a short period of disorientation, or how long it may take to locate them, how they may never be found or worse. An ex-navy officer was found after three very tense days, after the family pulled in all resources and contacts for the search, 35 Km away: Finding my lost father in Bengaluru Opens in new window. In a tragic case, a wandering senior was found in a slum five days later, dead of hunger, thirst, and dehydration: Daddy could have lived, if only Opens in new window. In another case, the family, unable to trace the missing mother, sought help of the court to follow up only to get the bad news: Missing for 1 year, elderly with Alzheimer’s died in rail accident: SIT to HC Opens in new window.See some wandering incidents and other care stories in this article, including an incident of a woman who 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. Another case of someone reunited with his family after 13 years: Tirunelveli police reunite retired army major, missing for 13 years, with family from Punjab Opens in new window. More stories where persons are still missing, along with related interviews and opinions of experts on awareness and support in India: Where’s my home? Opens in new window.
Technology and social media are playing an increasingly positive role to help in such situations. In one case, news spread on social media helped alert citizens spot the person who was then returned home safely: Netizens help family in Delhi trace Alzheimer’s patient Opens in new window. In another case, the police used CCTV to realize that a missing 84yo diabetic had not returned from the bank; the senior was finally found locked in the locker room when the bank opened: 84yo Alzheimer’s patient locked inside a windowless Jubilee Hills bank locker room for 18 hours sans food, medicine. Tracking missing persons has been done using HAM radio How Radio Was Used To Reunite Alzheimer’s Patient With Family In Kolkata Opens in new window, and there are many cases where alert citizens and police, along with use of social media and Whastappp have helped restore missing persons with their families like here Opens in new window, here Opens in new window, here Opens in new window and here Opens in new window.
Theme: Early onset dementia.
Many special challenges are faced by the person and family when a younger person gets dementia. 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.
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 can be seen in these four caregiver stories from India, all by spouses of the person with young-onset dementia, available in the Jan-Apr 2017 newsletter of ARDSI, on pages 6 to 9: Dementia News – ARDSI Newsletter, January – April 2017 Opens in new window (PDF file, 13MB, archived copy). 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)
Theme: When the caregiver is elderly.
In many situations 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.
Seeing the spouse with dementia decline is very difficult. There is a loss of shared memories and identity and grief over lost dreams of a shared future often add to the emotional stress of the situation. A retired English professor, married fifty years, goes down memory lane to share their earlier years together and her husband’s nature and situation and care related aspects: Life after oblivion Opens in new window. A wife talks of the decline in her once-active husband and her struggles of care and sense of hopelessness: Confessions of an anonymous woman: For better, for worse Opens in new window. A 85-year-old retired brigadier, caregiver for a wife with dementia, describes her deterioration and the difficulty of adjusting to that reality : Article by 85-year-old brigadier (retired) SP Bhattarcharjya on the care of his wife Opens in new window.
Particularly poignant is when a senior is caregiver for a child with dementia. A well-known case is of 92-year old Shefali Choudhury whose daughter started showing symptoms when still in her fifties. Shefali has described how she cared for her daughter for many years and how the daughter could no longer communicate or interact. Read more about the case: Mother’s fight against memory malady Opens in new window and Experts warn of dementia epidemic 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. Being a caregiver made Varsha Balakrishnan prone to anxiety attacks, as she describes in her essay: 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: Who Cares for Caregivers? Opens in new window. Stress may possibly be a contributor in extreme situations like Woman ends life in Idukki after slashing throat of Alzheimer’s husband Opens in new window.
Theme: Decisions and experiences around using care homes, day cares, and attendants.
Support for dementia care at home is very difficult to get, but using a daycare centre or making the decision to transition the person to a care home involves its own difficulties and challenges.
Many caregivers face practical problems making arrangements for care. 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. In an experience sharing at a support group meeting, caregivers describe the challenging behavior of patients and the social ostracizing the family faces: Read the coverage here. Opens in new window.
Persons with dementia are also vulnerable when left in the care of paid caregivers – caution needed to protect them from assault, theft, and other such things. There has been an increase in reports of theft and fraud such as : Caretaker arrested for stealing jewellery from 71-year-old employer Opens in new window, Alzheimer’s patient homeless after kin, caregiver plot S Kol property sale Opens in new window and Alzheimer’s patient duped of Rs 2.6 lakh by help working for 15 years Opens in new window . Assault, also, is increasingly being reported, including situations where it led to death : Caregiver booked for assault on 77-year-old Alzheimer’s patient | Mumbai news Opens in new window, Home-Nurse in Kerala Arrested for Brutal Assault on Alzheimer’s Patient Opens in new window and Alzheimer’s patient assaulted by caregiver dies (archived copy) Opens in new window. Making arrangements for parents when living far away can therefore be very challenging, as shown in this case : How India-based Elderly Parents of Indian Americans are Becoming Targets of Abuse Opens in new window.
The decision to move someone to a care home can also be very agonizing. A 54yo wife, whose 55yo husband (early-onset dementia) started experiencing problems since the age of 44, shares the problems faced and her decision to place him in a care facility,: Dementia costs soaring; govt unfazed (See Anupama’s story towards the end of the article) Opens in new window. A young man describes the conflicts and anger and guilt as his family members differed over hard decisions when unable to handle care at home for the person with dementia, and how opting for institutionalised care often involves a lot of guilt. Home Care or Institutionalization Opens in new window. Carol D’Souza recounts her mother’s advancing dementia, the difficulty of handling the changed behavior and how she and her family made peace with the agonizing decision to put her in a care home 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.
Getting better support for home care, and maybe using day cares and care homes, may help the person get a better quality of life. An extensive article on dementia in India describes experiences of persons with dementia and explains that quality of life can be improved even if abilities cannot. With a little help from my friends Opens in new window. A 16-year old day care volunteer shares her experiences and learning from a day care and maps it to her personal experience of a grandfather with dementia: “Remember me?” (PDF file, article on page 8) Opens in new window. But not all such experiences work out: Old age home to pay Mulund family Rs 75K for poor care of ailing dad Opens in new window.
Theme: “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. Supporting from a distance poses many planning and management issues, and is also emotionally difficult.
Caregivers share their experiences of setting up systems for remote support of care and the adjustments they make to take care . Some caregivers living outside India describe their system – using daily phone calls, Skype, and frequent visits – and 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. Some sharing around this: Caregiving From Another Continent Opens in new window, Duty and distance: Caring across generations and continents Opens in new window.
Guilt and helplessness are common emotional experiences of children trying to support care from a distance. A journalist daughter describes her father’s dementia, her mother’s caregiving, her attempt to support from a distance, and her guilt and helplessness, and adds in useful information on dementia, and authoritative quotes and excerpts: The mind never mattered more (archived copy) Opens in new window. Eshwar Sundaresan, had been 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 lessons he has learned from this role in They Understand Only Love Opens in new window. Eshwar had also given an interview earlier with us at His condition affected every sphere of my life: a son talks of his father’s Alzheimer’s. and seen together, these give us an insight into how he integrated his experience in his life-view over time.
Some articles on problems like physical and financial abuse of parents living alone by their paid caregivers are shared in the section on decisions and experiences around using care homes, day cares, and attendants.
Theme: Special challenges faced in dementia care during COVID.
As COVID is no longer actively considered an issue, this theme is closed from further updates. Given below are some articles that show the care challenges faced during COVID due to the infection and lockdown/ restrictions because they illustrate how dementia care is more affected by such extreme situations.
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 (archived copy) Opens in new window and Bengaluru Dementia patients, caregivers try to cope with locked down environment (archived copy) Opens in new window.
Care homes faced severe problems during COVID with many vulnerable residents living together and the care homes having COVID 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: “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.
Diverse care situations, symptoms, challenges, introspection, comments.
Articles spanning multiple aspects of the situation and challenges provide a more comprehensive insight into a family coping with dementia – how dementia presents itself, various caregiver challenges, and how care affects them. These may be personal pieces by caregivers or interviews of multiple caregivers, sometimes including data on dementia and resources and comments by experts or volunteers. Alas, these challenges remain much the same even though there has been some improvement in awareness and some more service providers now offer services.
Some articles combine multiple interviews sharing personal experiences, giving a deeper insight into multiple aspects around living with dementia. One such article: Why it is a lonely journey for dementia caregivers Opens in new window. Here is another where nine caregivers talk about their personal experiences of seeing a loved one decline, symptoms, diagnosis, care challenges, and heartbreak in this detailed article at scroll.in: Living with dementia: The searing ache of being a family caregiver in an Indian city Opens in new window. Two caregiver stories describing 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. More sharing on care challenges by caregivers and comments by experts also give the context of dementia and their suggestions: World Alzheimer’s Day: A caregiver’s struggle Opens in new window. And some sharing by caregivers on where they looked for information and company online: Caregivers Find Solace in Virtual World Opens in new window.
Caregivers also wonder what they can do to reduce their own chance of dementia, having seen its impact and knowing it may run in the family. Read Alanna Shaikh, whose father suffered from Alzheimer’s, share her thoughts and approach: Preparing for Alzheimer’s Opens in new window.
Poverty is a common challenge in care but unfortunately highly under-discussed. Here is a very tragic story that did get published: a 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. They 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 some months later 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.
Anis Hoda’s blog on final stages of dementia: This touching and highly personal blog has around 50 entries where Anis, and his wife, Mariam, share small and big incidents related to the mother’s life (she had vascular dementia). Memories, incidents, and touching details of the decline of the mother’s state and her passing away are shared: 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 shares experiences – as a caregiver and daughter, and later a volunteer, and includes stories from friends and relatives. Her blogs are available at (older blog) careforcarers.wordpress.com Opens in new window and (more recent) fromoutsidethemall.wordpress.com Opens in new window (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.
Nishi Pulugurtha’s blog: Nishi Pulugurtha’s mother had dementia. Nishi – a poet, writer, and reviewer – has written about her personal experiences and feelings as a daughter and carer, and her thoughts around dementia and Alzheimer’s Disease on the Café Dissensus site Opens in new window, and can be located using tags like Alzheimer’s Opens in new window and dementia Opens in new window.
Prem Panicker’s mother had dementia. After her passing, he has made some blog entries about 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
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 – showing how his life and that of his caregivers changed as the disease progressed. See Parables of a Parkinson’s Patient Opens in new window.
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, has 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.
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