Dementia Home Care in India: a framework to understand it, and suggestions for caregivers and volunteers

As an ex-caregiver who tries to help other caregivers, I continue to be dismayed by how unprepared and unsupported families are through years of exhausting and heart-breaking dementia caregiving. Many families never get a diagnosis. Even those who get a diagnosis rarely get a realistic picture of how much they need to plan, what changes they will have to make in their lives, and how absent systemic support systems are.

Again and again, I find families clueless about the deterioration dementia brings. They do not know that dementia will keep worsening and that the person will become almost fully dependent. They have not registered that they will be using more and more of their time and money and energy for care. They often think dementia as memory problems; they do not know the person’s abilities will keep reducing. This will go on for years, and during this they will see the person deteriorate in heart-breaking ways. They start this journey unprepared, with no one holding their hands.

Almost all dementia care in India happens at home. Advice given to caregivers assumes many things about what families can afford and the time they have for caregiving. Families do not get a realistic picture for effective planning. They remain unaware of many potential problems. Possibly the advisers themselves do not understand the overwhelming and prolonged nature of care. And advisers do not appreciate that 24×7 home care differs from a day job of a trained professional who is part of a multi-disciplinary team. So a lot of their well-meaning advice is impractical because, though good in itself, the advice does not fit the family’s care context.

The fact is, dementia awareness and support in India is so poor that family caregivers have to create their own group of supporters. They have to plan for dementia caregiving and also for self-care. They have to plan finances for a marathon stretch of increased costs and reduced incomes. They have to see how to take out the required time and energy for years of care. They have to prepare for the emotional journey of caring and their stress and fatigue. They have to appreciate the limitations of the systems and support around them, and have realistic expectations. And all such planning has to be done early, because they will not be able to do much planning once they are submerged in intense caregiving.

Home care for someone with dementia is not a simple short-duration activity. Care happens for several years, and in the context of the culture and society and the family’s other obligations and desires. Many long-term decisions are made. We need to view dementia home care as part of this framework in order to understand and plan it better. We have to appreciate the limitations and then seek practical answers.

I have been mulling over this for a while now, and recently I put together my thoughts on such a framework along with some suggestions for caregivers and volunteers. Alas, there are far too many problems, and very few solutions or suggestions. I am not sure how much my presentation will help viewers, but it will surely give them something to think about. Maybe it will prompt families to derive practical approaches for their care situations. Maybe volunteers will find better ways to support families. You can view the presentation below, or view the presentation directly at Slideshare if the player below does not load properly.

Also, some similar posts and pages, and some resources:

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

4 Responses to Dementia Home Care in India: a framework to understand it, and suggestions for caregivers and volunteers

  1. Need guidance for dementia patient bec they sometime turn so violent its difficult to handle

  2. Ajitha says:

    My father slowed down a couple of months back but managed to look after himself. Today he is completely bedridden unable to do anything on his own. I have resigned from my post as coordinator at a school to be with him. I amlooking after all his needs as I am not able to get a caregiver in Bangalore. I am not sure how long this will go on .it I am so stressed looking after mom and dad that I am isolating myself from all friends. How do I make my life easier?

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