In India, because of lack of recognition of the dementia caregiver’s role and challenges, caregivers are unable to connect with others facing similar situations. Many caregivers do not openly talk about their experiences because people around them do not understand. They do not want to be criticized or to be told they are “complaining” or neglecting their “duty”.
Because care experiences are not shared, caregivers do not have enough sources to know what sort of situations they may face. They are not able to benefit from each others’ observations and tips on handling day-to-day problems. They find it more difficult to improve their caregiving skills because each caregiver is alone and trying to learn everything alone.
In this section, you can read various caregiver voices related to dementia care in India, all gathered through interviews, blogs, and news articles. Also, healthcare professionals and volunteers who work closely with dementia families have shared some experiences and suggestions to empower families in their care.
- Interviews with Indian dementia caregivers.
- Dementia caregiving in the news (India).
- Books by Indians sharing dementia care experiences.
- Persons with dementia share experiences.
- Tips and advice from health care professionals and volunteers.
Pages of this section have links to various interviews with caregivers, volunteers and experts also. These are listed below for convenience.
Caregiver interviews:
- Late-stage care, heartbreaks and tender moments, hospitals, dilemmas, decisions: a daughter narrates.
- 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.
- Dementia caregiving can create chaos: a solo caregiver describes challenges faced on multiple fronts.
- 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.
- Long distance caregiving: a caregiver describes the challenges and her approach.
- Caregiving challenges, trained ayahs, depression: a caregiver’s story.
- A family recognizes dementia and adjusts for it: a social worker narrates her family’s story.
- She was only pretending to forget: A family in denial even after the patient’s death .
- Father thought I wanted to kill him: a daughter talks of her father’s dementia.
- Remote caregiving: an arrangement, and issues faced.
- Supporting the primary caregiver: Mistakes made, lessons learnt, tips shared.
- Our presence here makes a difference to her: a son talks of supporting his caregiver mother.
- When you are in the rut of things you can’t think: a doctor-caregiver shares.
- My husband is a living doll: A 78-year-old wife taking care of her 86-year-old husband.
- His condition affected every sphere of my life: a son talks of his father’s Alzheimer’s.
- Conflicts in the family over dementia care.
- Ekta Hattangady: Fifteen years old when her mother was diagnosed with Alzheimer’s.
Other interviews:
- 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.
- Use “Active Ageing” to age better and reduce dementia risk: part 1.
- Use “Active Ageing” to age better and reduce dementia risk: part 2.
- 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.
- Care in a dementia day care centre: a social worker explains.
- Keeping persons with dementia peaceful and improving their quality of life: practical tips from a nurse.
- Taking dementia patients for outings: a volunteer shares his experience.