Every caregiver has a story. Even persons associated with/ concerned about caregivers have experiences to share. Below, there are links to several interviews of dementia caregivers, volunteers, and experts, to expose us to multiple perspectives and experiences of dementia care and share a range of observations and tips.
Blog of a dementia caregiver in India: Swapna Kishore writes extensively about her personal experiences of caring for her mother, and also shares observations as a resource person for dementia care.Click here- Interviews with dementia caregivers
- A daughter, solo caregiver of a father with dementia, struggles to handle caregiving, financial problems, isolation, problems in her marriage, and an unsupportive brother
- A daughter’s detailed description of care for her fully dependent father, including home care, hospitals, dilemmas, challenges
- A daughter-in-law describes the challenges and heartbreak of care for a bedridden mother-in-law
- Early warnings, diagnosis, medication, side-effects, an elderly father as caregiver: a daughter talks of her mother’s dementia
- My mother is my top priority now: a daughter describes how she became an informed and empathetic caregiver
- She would simply hold on to me for support: a husband cares for a wife with dementia
- A dementia caregiver shares her story and her caregiver wishlist, describing what she thinks volunteers and NGOs can do to improve awareness and caregiver support
- A caregiver who lives in the USA but frequently visits India to help in caregiving, describes how she and her siblings coordinate caregiving
- Caregiver coping with multiple medical problems of fully dependent patient
- A family that cared for a dementia patient still sees the patient’s challenging behaviour as meanness, and not caused by dementia
- A dementia patient accuses his daughter of attempting murder: a daughter describes care challenges
- A niece realizes her aunt may have dementia; family sets up an appropriate care environment
- A primary caregiver’s husband suggests tips to support dementia caregivers
- Siblings arrange remote care for mother in another city
- A son and his siblings put systems in place to be present for the dementia care
- An elderly caregiver looking after husband alone
- A doctor unprepared for her grandmother’s dementia care
- Impact of a father’s Alzheimer’s on a son watching his mother provide care
- A remote caregiver describes family conflicts over patient care in India
- A teenage caregiver, a mother with early-onset Alzheimer’s
- Caregiver stories shared through comments on the site: Links to comments where caregivers share their stories while commenting on existing interviews. Read about caregiver guilt, coordination with siblings, overwhelm, helping children adjust to dementia in the family.
- 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
- A development consultant describes his work on dementia awareness in Mumbai
- A development consultant shares her perspectives on caregiver role and challenges
- A volunteer describes how to have activities and outings with dementia patients
- A social worker explains the working of a dementia day care centre
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Interviews with dementia caregivers
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 and in another city. Ritika entered the solo caregiver situation without realizing it, through a series of steps forced by misunderstandings caused by her father’s behaviour and her brother’s response to them, and she has been handling the caregiving alone for three years while also having to earn money and cope with the 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, but now she is finding her balance and trying to make the best of her situation. In this detailed interview she shares the sequence of events, how every relationship has been tested in the last three high-stress years, how she copes, what she thinks of her future and how she manages to carry on in spite of such an extreme caregiving situation. Read the interview here: Dementia caregiving can create chaos: a solo caregiver describes challenges faced on multiple fronts.
A daughter’s detailed description of care for her fully dependent father, including home care, hospitals, dilemmas, challenges
Vijaya is a Mumbai-based qualified accountant, who 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, and how she and her sister cared for their father as his dependence increased. Interview includes descriptions of hospital visits, dilemmas and decisions, challenges of handling nurses, work involved in home care, and tender moments 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.
A daughter-in-law describes the challenges and heartbreak of care for a bedridden mother-in-law
Neena, a chartered accountant who left her professional work to look after her mother-in-law, describes the challenges and heartbreak of home care of a bedridden patient with multiple medical problems. She describes how Ma became bedridden, how they had to set up their home for the complex nursing care required, the challenges they face, Ma’s pain and unhealed wounds, the occasional incidents when Ma communicates and connects with them, the difficulty of seeing 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
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, something the family found out only after years of watching her slowly-increasing forgetfulness. Care is being given by Mala’s father, who refuses help. In this interview, 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
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 and residing in India to care for her 80+ mother who suffers from Alzheimer’s. She shares how the progression of her mother’s illness reflected in behaviour changes, how the family took time registering that these changes were different compared to earlier, more regular difficult behaviour displayed by her mother, and how Nadira has now educated herself on the condition and developed the patience, love, and empathy required 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
She would simply hold on to me for support: a husband cares for a wife with dementia
Ramana Rajgopaul, a successful professional manager, gave up his lucrative career to become the caregiver for his wife after multiple cerebral and cardiac infarcts. His wife has since passed away. In this interview, he describes his experiences and emotions as his wife’s caregiver, how caregiving made him a different person, how he did whatever he could 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
A dementia caregiver shares her story and her caregiver wishlist, describing what she thinks volunteers and NGOs can do to improve awareness and caregiver support
Kalpana Malani, a Mumbai resident in her mid-fifties, is a caregiver for a mother with dementia. She balances this responsibility along with her other family responsibilities and managing her own retail business. In this interview, 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
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 Sudha has settled in the USA with her husband, she spends several months a year living in Noida to help her mother care for her father. In this interview, Sudha describes how she and her siblings coordinate long-distance care using frequent phone calls and visits, and also using technology to streamline the care. She describes the differing approaches of her and her siblings, and shares her thoughts on sibling mismatches. Read the interview here: Long distance caregiving: a caregiver describes the challenges and her approach
Caregiver coping with multiple medical problems of fully dependent patient
Neena, a chartered accountant with 22 years experience, has quit work to manage care for her mother-in-law, who is now dependent for all activities. She describes the caregiving situation and challenges here. Read the interview here: Caregiving challenges, trained ayahs, depression: a caregiver’s story
A family that cared for a dementia patient still sees the patient’s challenging behaviour as meanness, and not caused by dementia
Rukmini’s grandmother was diagnosed with dementia, but the family ignored the diagnosis and treated her as a stubborn and inconsiderate old woman. In this interview, Rukmini describes how the family’s denial about dementia continues even now, years after the grandmother’s death. Read the interview here: A family’s denial about a dementia diagnosis
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 behaviour. Read the interview here: A daughter describes her father’s dementia behaviour challenges
A niece realizes her aunt may have dementia; family sets up an appropriate care environment
When her 83 year old aunt started behaving strangely, Bharathi realized that she could be suffering from dementia. Bharathi shared this with the family by providing them literature on dementia, and the family then obtained a diagnosis, and adjusted their lives around the aunt’s dementia. Read the interview here: A family recognizes dementia and adjusts for it
A primary caregiver’s husband suggests tips to support dementia caregivers
Rajesh’s mother-in-law is a dementia patient; his wife, the primary caregiver. In this write-up, Rajesh shares how he didn’t support his wife in the initial days because of ignorance/ incorrect attitude. He suggests ways to support primary caregivers. Read the interview here: Supporting the primary caregiver: Mistakes made, lessons learnt, tips shared
Siblings arrange remote care for mother in another city
David’s mother suffered from Alzheimer’s Disease. As neither David nor his siblings lived in her city, care had to be coordinated remotely. In this interview, Davis shares the remote caregiving arrangement used and the problems faced. Read the interview here: Remote caregiving: an arrangement, and issues faced
A son and his siblings put systems in place to be present for the dementia care
This is a follow-up interview of the case above, conducted a few weeks later. Here, Saraswathi’s son Ranganath describes the changes the family has made to support care of their father. Ranganath and 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
An elderly caregiver looking after husband alone
Bangalore-based Saraswathi Subramoney is 78 years old and lives in Bangalore with her 86-year old husband, who suffers from Parkinsonian dementia. In this interview, she describes the problems of being an elderly caregiver and the overwhelming nature of caregiving even as her children, living in other cities, are trying to make suitable arrangements to support her. Read the interview here: : Elderly caregiver overwhelmed caring for her husband who has Parkinsonian dementia]
A doctor unprepared for her grandmother’s dementia care
Vidya is a doctor whose grandmother started exhibiting dementia symptoms after a stroke. Vidya’s mother and aunt took turns are the primary caregiver, and Vidya supported them. Vidya realises 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
Impact of a father’s Alzheimer’s on a son watching his mother provide care
Varun’s father has Alzheimer’s Disease. For some years, when his parents lived with him, Varun was helping his mother in dementia care and found it affected all spheres of his life. Now that his mother has taken his father to their hometown because she wants her relatives and friends around them, Varun wonders how to support them. Read the interview here: Father’s Alzheimer’s changes a son’s life
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 the progression of the disease and the care, and how the family’s lack of communication, resentments, and conflicts complicated the situation. Read the interview here: Overseas caregiving and family conflicts over dementia care
A teenage caregiver, 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, facing the unusual situation to the best she could. She shares her experiences of those unsettling years. Read the interview: A case of early-onset Alzheimer’s Disease
Caregiver stories shared through comments on the site
Below are some links to comments where caregivers share their stories while commenting on existing interviews. ead about caregiver guilt, coordination with siblings, overwhelm, helping children adjust to dementia in the family.
- Children adjusting to dementia: A father helps his daughter accept the grandmother’s behaviour.
- Overwhelming care for a dependent father: A daughter describes the amount of care for her wheel-chair bound father and she also describes the dilemma of deciding whether to move in closer to a sibling to manage the work.
- Caregiver guilt: A caregiver who faced a dilemma of balancing her mother’s care with other problems, including her husband’s cancer, describes her stress, guilt and regret.
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 where caring for patients with dementia is an everyday occurrence. She has interacted extensively with several dementia patients as part of her professional work. In this interview, she uses her professional experiences to shares tips that can be used by family caregivers looking after persons with dementia in a home setting, including activities to keep patients occupied, changes that can help reduce their agitation and disorientation, and simple techniques like making things like rummage boxes and fiddle mats, which can engross patients. Read the interview here: Keeping persons with dementia peaceful and improving their quality of life: practical tips from a nurse
A development consultant describes his work on dementia awareness in Mumbai
Mumbai-based Sailesh Mishra works in the area of elder care, and 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
A development consultant shares her perspectives on caregiver role and challenges
Shikha Aleya, a development consultant, is working with colleagues to create Caregivers Link, a forum to connect caregivers, resource people, and organizations. In this interview, she shares her observations about caregiver concerns, perceptions, and needs. Read the interview here: : Invisibility of caregivers leads to their isolation
A volunteer describes how to have activities and outings with dementia patients
Dementia patients can enjoy outings (if well-planned) to places they find interesting. 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.
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 involves. 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, and the challenges faced by the staff and how they are handled. Read the interview here: Care in a dementia day care centre: a social worker explains.
