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BOOK: Dancing With Dementia
Posted: Sunday, August 16, 2015 12:40 PM
Joined: 7/24/2015
Posts: 3020

I strongly recommend the book, Dancing With Dementia, by Christine Bryden to anyone with dementia, Alzheimer's, and loved one with it, or who just simply wants to know more about what our experience is like.

Of all the books I have read (skimmed) on the subject, I keep coming back to this one. I have copied parts and handed it to my caregivers to say, "here, it is like that..." because she puts it so well.

Apparently, as I have gathered from her book, the Alz Asso was never inclusive of those with dementia before...and it was thru her speaking out, and a few others along the way that got us included.

As I find myself, who still thinks of myself as a person with all my rights of personhood despite diagnosis), getting increasingly disheartened that we still have so far left to go still. Doctors still talk past us or write us off, caregivers still don't treat us like people...or, realize we are struggling as much as we are because we can talk. And even here, our own association is more an association for our caregivers than for us...still. And our voice is still discounted. Anyways, I found her inspirational...and it touched the proactive side of me.

What she does best though, in this book, is describe almost exactly what we are experiencing. I am so grateful for her book...I think you might like it too.

Posted: Monday, August 17, 2015 8:22 AM
Joined: 5/20/2014
Posts: 4405

I can barely remember the titles of all the books I've read about dementia. But I think I just read the end of this book last week. Where she started support groups for the actual PWD! She's spot on about this disease being more about the carers' than PWD. BTW, our friend Michael Ellenbogan, has written a good book, From the Coroner's Office to Alzheimer's. Someone on the board told me that the patient board was more of an afterthought. That this board was designed and set up mainly for caregivers. I have to wonder if anyone even expected that we would still be here?
Posted: Monday, August 17, 2015 1:30 PM
Joined: 7/24/2015
Posts: 3020

I did not know her wrote a book, thank you for letting me know. I have become very interested in books by people with dementia...the others just skim the surface in a way that is no longer useful.

I hope to put some quotes in by is just you almost need to quote a whole page to get what she is saying. Never have I read a book where I have gotten so excited and said, "yes, yes, yes!"

I did find their website...but it seems largely abandoned. I am not sure if it needs some of us to pick it up. Wish my brain worked better so I could more easily and quickly figure out what to do...because right now I am stuck in so much growing pains. I am less hurt by the disease, than by the way things are around the disease...there just has to be a way to fix this.