HBO’s Alzheimer’s Project

I’ve been busy, not enough time to write a detailed post on a few topics I want to, but then I saw this set of video streams, and it was worth writing about: HBO’s Alzheimer Project.

If you want to see what dementia means to the patient, and to  caregivers, this is an absolute must. The project includes a set of videos (which will be available for sale later), and guides that go along, and supplementary material. There is also a lot of data that makes the impact really sink in. Did you know, for example, that 54% of the people in America have been touched by Alzheimer’s, as patients, relatives, friends, whatever.  The national impact of Alzheimer’s (for USA) is discussed.

One of the dementia patients interviewed has been using a blog to record his thoughts as he progresses through the disease (see: Joe Potocny’s blog ). He also twitters.

It was while going through these video streams and other material that I realized how different it is in India, where diagnosis usually happens (if at all) in middle to late stages.

I, for one, have not met a patient diagnosed at a very early stage, who understands he/ she has dementia but is still almost fully alert/ functional, and is therefore planning for and dreading the future. I have not seen a family where the patient explains to his/ her grandchildren what will happen to him/ her because of the disease in a few years. I do not know patients who have grasped the impact of the disease in time to say their farewells the way they may want to.

If ever I get dementia, I would like to know in time to enter the state with grace and after having said my farewells and given my hugs to all I care for, after neatly setting aside my life as memory forces me to.  Even if the disease is non-treatable, surely there can be dignity in the way one embarks on this downward slide, dignity while it lasts.

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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.

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