dementia caregiving in India, some thoughts (part 2)

(As this blog entry received both online and offline feedback, and as its content is very relevant for anyone who wants to understand how to interpret available material on dementia in the Indian context, I have moved the content of the blog entry to a page that I can keep updating based on comments received. You can see the page here: Applying available dementia/ caregiving material to the Indian context.

There is a lot of material available on the web (free) on dementia and caregiving. There are also several books.  As a caregiver, I read these to educate myself and make caregiving smoother for my mother and myself.  I face one problem: most of the material assumes a social and cultural context different from what I find in India.

Briefly, books, pamphlets, write-ups available usually assume an American/ European/ Australian culture, where people are likely to live independently, openly (and without hesitation) make choices that allow them to “have a life”, discuss their desires and needs, and have their privacy respected. Specialized tools are available, and information on dementia is widespread. The role of support persons and caregivers is recognized and respected. The environment in India differs along these axes in varying degrees. We must therefore re-interpret some lessons/ suggestions, and explore alternate means to meet the intent. This is applicable to caregivers, counselors, support groups, and  NGOs.

Here are my initial observations and thoughts on differences and possible ways to re-apply the underlying ideas in our context. I would love feedback and suggestions on this material so I can develop it into a more usable note.

Privacy and independence In India, people openly comment on others, judging and criticizing them for the choices they make, for what they look like, for what they are doing and not doing. Caregiver actions are therefore, fair game for everyone. Many people who comment are well-meaning but ill-informed. They pass caustic comments, especially if the caregiver is a daughter or daughter-in-law and the visitor is elder (and elders are always experts🙂 ). Worse, visitors egg on the patient by telling them to demonstrate more will power, or criticize/ scold  the caregiver in front of the patient. Unfortunately, methods of maintaining patient and caregiver sanity in face of such visitors are  not addressed in books on dementia care, because they assume a society where people (even if judgmental or critical) are unlikely to voice this directly (however, they may call up social workers and the police😦 ).

(The above is just an excerpt. Read the full entry here: Applying available dementia/ caregiving material to the Indian context.

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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.

2 Responses to dementia caregiving in India, some thoughts (part 2)

  1. Carol O'Dell says:

    Thank you so much for your “cultural lesson” in caregiving. I am an author and international speaker in the areas of family caregiving, Alzheimer’s, and Parkinson’s, and I am aware of the cultural differences and what’s expected, but I didn’t know in such detail what, in particular Indian women face.
    I felt many of the same emotions and reactions from my family and friends, here, in the U.S., but I do see that Indian women face it to even a more drastic degree. For me, I had to finally give up trying to make my relatives “like me.” Caregiving (I cared for my mom who had Parkinson’s, and later, Alzheimer’s) is hard enough, and after a while you have to do what you believe is right. I did feel myself pulling in at times–not willing to share my struggles because I didn’t want to be judged. My heart goes out to families who care for their loved ones. I know their struggle.

    Thank you again,

    Carol D. O’Dell
    Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, available on Amazon
    http://www.mothering-mother.com

  2. swapnawrites says:

    Thanks, Carol.

    I am glad you enjoyed the post. I was looking at your website, and am very impressed by what you have done, and what you continue to do. Great set of resources, too. Thanks for sharing.

    Cheers

    Swapna

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