dementia caregiving in India, some thoughts (part 2)
March 17, 2009 2 Comments
(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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