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.
- Interviews with dementia caregivers:
- A daughter describes care for her fully dependent father. Includes home care, hospitals, dilemmas, and challenges.
- A daughter-in-law describes the difficulties and heartbreak of care for her bedridden mother-in-law.
- Early warnings, diagnosis, medication, side-effects, an elderly father as caregiver: a daughter talks of her mother’s dementia.
- A daughter, solo caregiver of a father with dementia, struggles to handle caregiving, financial problems, isolation, problems in her marriage, and an unsupportive brother.
- 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. She suggests how volunteers and NGOs can 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 copes with the many medical problems of a fully dependent patient.
- A family that cared for a dementia patient still sees the patient’s changed behavior as meanness.
- A dementia patient accuses his daughter of attempting murder. The daughter describes care challenges.
- A niece realizes her aunt may have dementia. The family sets up a suitable 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 .
- A son watches his mother care for a father with Alzheimer’s.
- A remote caregiver describes family conflicts over patient care in India.
- A teenager’s care for a mother with early-onset Alzheimer’s.
- Caregiver stories shared through comments on the site: 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.
- Interviews with volunteers and experts working in dementia care:
- The dementia diagnosis process: a four-part interview.
- Use “Active Ageing” to age better and reduce dementia risk: a two-part interview.
- Home care for late stage dementia, information and practical suggestions, a six part series.
- 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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.
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
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].
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.
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 .
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.
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.
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.
- Children adjusting to dementia: A father helps his daughter accept the grandmother’s behavior.
- Overwhelming care for a dependent father: A daughter describes the amount of care for her wheel-chair bound father. She also describes the dilemma of deciding whether to move in closer to a sibling to manage the work.
- Caregiver guilt: A caregiver talks of her problems balancing her mother’s care with other concerns like her husband’s cancer. She describes her stress, guilt and regret.
A proper diagnosis is essential to know if someone has dementia, and then to start planning the care for the person. But families are often unsure how to prepare for the doctor visit, what the doctor may ask, and what will happen during the visit. To help, families understand and handle the diagnosis process, we have a four-part series on the diagnosis process with Dr CT Sudhir Kumar, a Consultant Psychiatrist with several years of experience in dementia and elderly mental health services in the UK and India. In this series, he explains the diagnosis process and gives practical suggestions for families to prepare for and handle the diagnosis process effectively.
The interview series starts with a discussion of some basics of how families can start the process of selecting a doctor and preparing for a visit in Part 1. Some important terms related to dementia are also discussed. Part 2 then goes into details of how families can prepare for their meeting with the doctor, such as the type of symptoms and other information to tell the doctor about and preparing the medical history file for the doctor. Part 3 focuses on the doctor visit, such as how to explain the situation, and what sort of things the doctor may ask during the visit, and about tests, scans, etc. And in the concluding part, Part 4, we focus on getting clarity on the diagnosis and any prescribed medicines, getting some important information for ongoing treatment and care. There are also some tips on handling review appointments. Read the interviews here:
- The dementia diagnosis process, Part 1: Getting started and selecting a doctor.
- The dementia diagnosis process, Part 2: Preparing for the doctor consultation.
- The dementia diagnosis process, Part 3: Meeting the doctor and getting a diagnosis.
- The dementia diagnosis process, Part 4: Understanding the diagnosis and what comes next.
It is common for people to worry about how their physical and mental abilities will reduce as they grow old. Dementia caregivers also worry about their risk of getting dementia. We have a two-part series to discuss what can be done to reduce the chance of problems. In these, Ramani Sundaram, a neuroscience research scientist working at Nightingales Medical Trust, describes the “Active Ageing” program at the Nightingales Trust Bagchi Centre for Active Ageing (Bangalore), a holistic program that aims to bring lifestyle modification and ensure health and happiness of the elderly, thus making ageing a positive experience. The program focus is on minimizing the risk of dementia, controlling hypertension, diabetes, and depression, and preventing falls.
This interview series shares information and suggestions for persons interested in ageing well. In part 1, we talked about program and its context and objectives, how participants are assessed before they join, and also listed the three components of the program (physical activity, mental stimulation, and socialization). The first component, physical activity, was discussed. In Part 2, we discuss the mental and social components of the program and talk about how persons who can’t leave home (like many caregivers) can adapt and use these. We also talked about the use of the program for persons mild cognitive impairment or early dementia. Read the interviews here:
- Use “Active Ageing” to age better and reduce dementia risk: part 1
- Use “Active Ageing” to age better and reduce dementia risk: part 2
Persons in late-stage dementia are almost totally dependent, confined to a wheel chair or a bed, and have serious memory problems and physical complications. In India, care for persons in this stage is usually done by family caregivers, and can be very challenging. Dr. Soumya Hegde is a Bangalore-based Consultant Geriatric Psychiatrist, with extensive experience in supporting people with dementia and their families through all stages. We present a six-part series of interviews where she discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions.
The interview series begins with a discussion on how to organize the home and prepare for smoother care for someone with advanced dementia. We then discuss how to get medical advice and support for a late-stage person, in spite of their reduced mobility, etc. Special topics of daily care are then discussed, many of them related to areas often forgotten, such as skin care, bruises, bed sores, constipation, catheters, dental care, etc. Part 5 discusses a major concern area for late-stage care: when the person starts having swallowing and eating problems, and doesn’t seem to be taking in enough food. The interview looks at possible reasons. And finally, we discuss the very difficult decision: tube feeding. DR. Hegde explains the options, the pros and cons of each, and gives some suggestions on what families can look at while making the decisions, and how the person phases out. Read them here:
- Home care for late stage dementia, Part 1: Prepare for home care
- Home care for late stage dementia, Part 2: Getting medical advice and preparing for decline
- Home care for late stage dementia, Part 3: Bruising, skin care, exercise, massage, bedsores
- Home care for late stage dementia, Part 4: Constipation, Catheter use, Dental Care, Improving the Quality of Life
- Home care for late stage dementia, Part 5: Eating/ swallowing problems
- Home care for late stage dementia, Part 6: Tube feeding and related decisions
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
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
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
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.
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.