Voices: Interviews with dementia caregivers, volunteers, and experts

Every caregiver has a story. Even persons concerned about caregivers have experiences to share. Below, we include links to several interviews of dementia caregivers, volunteers, and experts. These provide multiple points of view and multiple experiences of dementia care. They give a range of observations and tips.

Another significant resource is the blog of a dementia caregiver in India: Swapna writes blog: Swapnawrites. This blog, with over 200 entries, is by Swapna Kishore (the person behind this site). It has many detailed entries sharing personal experiences of caring for a mother with dementia. The blog also shares observations as a resource person for dementia care.

Interviews with dementia caregivers

A daughter describes care for her fully dependent father. Includes home care, hospitals, dilemmas, and challenges

Vijaya is a Mumbai-based qualified accountant. She set aside her career for some years to care for her father, a dementia patient. In this interview, Vijaya describes the final months of her father’s life. She talks about how she and her sister cared for their father as his dependence increased. The interview includes descriptions of hospital visits, difficult decisions, problems handling nurses, and work involved in home care. Vijaya also describes the tender moments she shared with the father in spite of his inability to speak. Read the interview here: Late-stage care, heartbreaks and tender moments, hospitals, dilemmas, decisions: a daughter narrates.

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A daughter-in-law describes the challenges and heartbreak of care for a bedridden mother-in-law

Neena is a chartered accountant who left her professional work to look after her mother-in-law. She describes the difficulties and heartbreak of home care of a bedridden patient with multiple medical problems. She describes how Ma became bedridden and how they set up their home for complex nursing care. She talks of the challenges they face, like Ma’s pain and unhealed wounds. She describes the occasional incidents when Ma communicates and connects with them, and how difficult it is to see Ma struggle. Read the interview here: When I see Ma struggle, I get very disturbed: a daughter-in-law describes the caregiving for a bedridden mother-in-law.

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Early warnings, diagnosis, medication, side-effects, an elderly father as caregiver: a daughter talks of her mother’s dementia

Mala has a mother suffering from Alzheimer’s Disease. The family got the diagnosis only after years of watching the mother’s slowly-increasing forgetfulness. Care is being given by Mala’s father, who refuses help from his children. Mala goes down memory lane to describe the early symptoms, the diagnosis and treatment, the family’s coordination for the care, and Mala’s own hope and guilt. Read the interview here: Early warnings, diagnosis, medication, side-effects, an elderly father as caregiver: a daughter talks of her mother’s dementia.

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A daughter, solo caregiver of a father with dementia, struggles to handle caregiving, financial problems, isolation, problems in her marriage, and an unsupportive brother

Hyderabad-based Ritika is a 48-year old solo caregiver for her 80-year old father. Her brother and sister-in-law live in Jammu and her husband is in the armed forces in another city. Ritika entered the solo caregiver situation without realizing it. This happened through a series of steps forced by misunderstandings caused by her father’s behavior and her brother’s response to them. She has been handling the caregiving alone for three years while also having to earn money. She talks of her emotional and physical isolation. Her marriage may not survive her prolonged absence from her husband’s home. Through these last three years, Ritika has faced extreme financial hardship and emotional setbacks. She is now trying to find her balance and make the best of her situation. She shares the sequence of events. She tells us how every relationship has been tested in the last three high-stress years and describes how she copes. She shares her thoughts about her future and how she manages to carry on in spite of such an extreme caregiving situation. Read the detailed interview here: Dementia caregiving can create chaos: a solo caregiver describes challenges faced on multiple fronts.

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My mother is my top priority now: a daughter describes how she became an informed and empathetic caregiver

Nadira, a highly-reputed consultant, is taking a break from her professional work to live in India and care for her 80+ mother who suffers from Alzheimer’s. She shares how the progression of her mother’s illness reflected in behavior changes. The family took time to understand that these changes were different compared to the earlier “difficult behavior” displayed by her mother. Nadira has now educated herself on the condition and developed the patience, love, and empathy she needs to care for her mother. Read the interview here: My mother is my top priority now: a daughter describes how she became an informed and empathetic caregiver.

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She would simply hold on to me for support: a husband cares for a wife with dementia

Ramana Rajgopaul was a successful professional manager. He gave up his lucrative career to care for his wife after she had multiple cerebral and cardiac infarcts. His wife has since passed away. He describes his experiences and emotions as his wife’s caregiver. Caregiving made him a different person. He talks of how he tried to keep his wife healthy and happy, how he shared tender moments with her, and how he misses her. Read the interview here: She would simply hold on to me for support: a husband cares for a wife with dementia.

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A dementia caregiver shares her story and her caregiver wishlist. She suggests how volunteers and NGOs can improve awareness and caregiver support

Kalpana Malani, a Mumbai resident in her mid-fifties, cares a mother with dementia. She balances this responsibility along with her other family responsibilities and her retail business. Kalpana describes her caregiving situation and problems, and shares her wishlist as a caregiver. Read the interview here: A dementia caregiver shares her story and her caregiver wishlist.

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A caregiver who lives in the USA but frequently visits India to help in caregiving, describes how she and her siblings coordinate caregiving

Sudha has a father with dementia. Though she has settled in the USA, she spends several months a year living in Noida to help her mother care for her father. Sudha describes how she and her siblings manage long-distance care using frequent phone calls and visits. They use technology to streamline the care. She and her siblings have differing approaches towards care; she shares her thoughts on these mismatches. Read the interview here: Long distance caregiving: a caregiver describes the challenges and her approach.

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Caregiver copes with the many medical problems of a fully dependent patient

Neena is a chartered accountant with 22 years experience. She has quit work to manage care for her mother-in-law, who is dependent for all activities. She describes the caregiving situation and the difficulties. Read the interview here: Caregiving challenges, trained ayahs, depression: a caregiver’s story.

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A family that cared for a dementia patient still sees the patient’s changed behavior as meanness

Rukmini’s grandmother was diagnosed with dementia. But the family ignored the diagnosis and treated her as a stubborn and inconsiderate old woman. Rukmini describes how the family’s denial about dementia continues even years after the grandmother’s death. Read the interview here: A family’s denial about a dementia diagnosis.

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A dementia patient accuses his daughter of attempting murder: a daughter describes care challenges

Nayantara’s father was diagnosed with dementia, but family members accuse Nayantara of exaggerating and claim she is after his money. In this interview, Nayantara shares the challenges of her father’s behavior. Read the interview here: A daughter describes her father’s dementia behavior challenges

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A niece realizes her aunt may have dementia. The family sets up a suitable care environment

When her 83 year old aunt started behaving strangely, Bharathi realized that she could be having dementia. Bharathi shared this with the family by providing them literature on dementia. The family then consulted doctors and obtained a diagnosis. They adjusted their lives around the aunt’s dementia. Read the interview here: A family recognizes dementia and adjusts for it.

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A primary caregiver’s husband suggests tips to support dementia caregivers

Rajesh’s mother-in-law is a dementia patient. His wife is the primary caregiver. Rajesh shares how he didn’t support his wife in the initial days because he did not understand dementia and had a wrong attitude. He suggests practical ways to support primary caregivers. Read the interview here: Supporting the primary caregiver: Mistakes made, lessons learnt, tips shared.

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Siblings arrange remote care for mother in another city

David’s mother suffered from Alzheimer’s Disease. Neither David nor his siblings lived in her city, so they had to manage the care from a distance. David shares the remote caregiving arrangement they used and the problems faced. Read the interview here: Remote caregiving: an arrangement, and issues faced.

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A son and his siblings put systems in place to be present for the dementia care

This is a follow-up interview of Saraswathi’s case below. It was conducted a few weeks later. Saraswathi’s son Ranganath describes the changes the family made to support their father’s care. Ranganath and his siblings now take turns to be present in Bangalore, and also use respite care, day care, and attendants, to ensure their mother is not alone in her caregiving. Read the interview here: Children of an elderly caregiver make arrangements and take turns to support the dementia care

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An elderly caregiver looking after husband alone

Bangalore-based Saraswathi Subramoney is 78 years old. Her 86-year old husband suffers from Parkinsonian dementia. She describes the overwhelming nature of being an elderly caregiver even as her children, living in other cities, are trying to make arrangements to support her. Read the interview here: : Elderly caregiver overwhelmed caring for her husband who has Parkinsonian dementia].

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A doctor unprepared for her grandmother’s dementia care

Vidya is a doctor whose grandmother started showing dementia symptoms after a stroke. Vidya’s mother and aunt took turns as the primary caregiver, and Vidya supported them. Vidya explains that none of them had known what to expect. They were not prepared for caregiving. Read the interview here: A family struggles to handle dementia care.

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A son watches his mother care for a father with Alzheimer’s

Varun’s father has Alzheimer’s Disease. For some years, when his parents lived with him, Varun was helping his mother in dementia care. It affected all spheres of his life. Now his mother has taken his father to their hometown because she wants her relatives and friends around them. Varun wonders how to support them from a distance. Read the interview here: Father’s Alzheimer’s changes a son’s life .

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A remote caregiver describes family conflicts over patient care in India

Sarla lives in the USA with her husband. Her mother-in-law, an Alzheimer’s patient living in India, passed away recently. Sarla writes about how the disease got worse. She talks about the care, and complications that happened because of the family’s lack of communication, resentments, and conflicts. Read the interview here: Overseas caregiving and family conflicts over dementia care.

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A teenager’s care for a mother with early-onset Alzheimer’s

Ekta Hattangady was 15 years old when her mother (then 45 years old) was diagnosed with early-onset Alzheimer’s. Over the next 4 years, young Ekta juggled caregiving and studies. She faced the unusual situation as best as she could. She shares her experiences of those unsettling years. Read the interview: A case of early-onset Alzheimer’s Disease.

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Caregiver stories shared through comments on the site

Below are links to stories that caregivers share in their comments on existing interviews. Topics they talk about include caregiver guilt, sharing work and responsibility with siblings, fatigue, and helping children adjust to dementia in the family.

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Interviews with volunteers and experts working in dementia care

Keeping persons with dementia peaceful and improving their quality of life: practical tips from a nurse<.

Sheila is a registered nurse who has worked in Aged Care assisted living facilities (long-term stay homes for elders). She is currently working in an acute hospital which includes care for patients with dementia. She has interacted extensively with many dementia patients. In this interview, she shares tips based on her professional experience which can help family caregivers looking after patients at home. These include activities that can be used to keep patients busy. She talks of changes that can reduce the agitation and disorientation of patients. Simple techniques to keep patients busy, like using rummage boxes and fiddle mats, are described. Read the interview here: Keeping persons with dementia peaceful and improving their quality of life: practical tips from a nurse

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A development consultant describes his work on dementia awareness in Mumbai.

Mumbai-based Sailesh Mishra works in the area of elder care. He is very concerned about dementia. As part of his ‘fight against dementia’, he conducts regular awareness programs for it. In this interview, he describes some of his experiences. Read the interview here: Mumbai dementia awareness programs, part of the fight against dementia

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A development consultant shares her perspectives on caregiver role and challenges

Shikha Aleya, a development consultant, is working with colleagues to create Caregivers Link. This is forum to connect caregivers, resource people, and organizations. She shares her observations about caregiver concerns, perceptions, and needs. Read the interview here: : Invisibility of caregivers leads to their isolation

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A volunteer describes how to have activities and outings with dementia patients

Dementia patients can enjoy outings to places they find interesting if the outings are planned well. Satish Srinivasan, a volunteer at a dementia day care centre, describes how he arranges such outings and how patients respond. Read the interview here: Taking patients for outings: a volunteer shares his experience.

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A social worker explains the working of a dementia day care centre

Many of us have no idea of what care in a dementia care centre is like. In this interview, social worker Jincy Shiju describes how social workers at day care centres look after patients. She talks of the activities patients do. She describes the difficulties faced by the staff and how they are handled. Read the interview here: Care in a dementia day care centre: a social worker explains.

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