We need more of us sharing our caregiving experiences

In many of my blog entries on dementia and caregiving, I have shared my impression that poor awareness of dementia in India is a major concern area. I often feel that dementia is far less understood in India than in some other countries, and that the role of the caregiver not seen as a significant, contributing role  that needs special patience and skills.

Relevant in this context is the work of 10/66 Dementia Research Group. To quote them:, “10/66 refers to the two-thirds (66%) of people with dementia living in low and middle income countries, and the 10% or less of population-based research that has been carried out in those regions.” This group is a collective of researchers working on population-based research into dementia and related areas in these countries.

Interestingly, the website includes a report on Qualitative Studies which confirms my view of poor awareness of dementia and caregiving in India.

The report reminds me of a support group meeting where a caregiver shared how, when his father was diagnosed with dementia, the family was so ashamed they wanted to institutionalize him and  isolate him (hide him, get rid of him so that they were not associated with him), and when the son took over the caregiving, they isolated him, too.

I think we need more people speaking up about dementia, and about caregiving. We need more people admitting that the elders in their family have dementia (admitting to themselves, admitting to others). I hope more people will write about it (blogs, books, articles, reports, novels, whatever), speak about it, think about it, so that one day people with dementia in our country can life a fuller life to the extent their ability allows them, and carers can care for them and lead fulfilling lives of their own, all done with dignity.

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India, and deeply concerned about dementia care in India. On this blog I share my own 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 in this set of pages: https://swapnawrites.wordpress.com/about-contact/

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