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Last night I watched a PBS presentation called Aging Matters- Alzheimer's and dementia. Prominent experts who contributed were Teepa Snow and Dr. G. Allen Power. The program discussed caregiving, facilities, training, living with dementia and more. I had teary moments watching it. Not because I recall my own experience caring for my wife, but because how much we have to do yet in understanding the disease, educating and training direct caregivers, both paid and unpaid (families, that is), providing attractive facilities that accommodate the needs and abilities of the residents, providing meaningful support for caregivers, such as support groups, and available federal, state, county and local programs, removing the stigma of Alzheimer's, educating the public, and understanding and changing the paradigm of what dementia and it's related diseases are. I have resumed one dementia support group and will add 2 more next month at two different care facilities. This program has changed the way I will facilitate my groups. Teepa Snow commented that dementia is “just another way to live life until you die”. It sounds flippant, and “easy for her to say”, but if we could learn about the disease and change the way we think as individuals- that those with dementia have a productive life to live, which they do, and that we can contribute to that- maybe we, too, could consider Alzheimer's as just another way of dying.


The Aging Care forum does offer hope, empathy, advice, and some consolation to those who post their questions, and that's good, but there is so much more to consider. Although researchers are doing their best, it'll be a long time, yet, before we get a clinical breakthrough in treatment or preventative ( I don't consider any of the current drugs, including Aduhelm, as breakthroughs). So meanwhile, we have all these different areas mentioned above that need to be addressed today. The video has been posted to YouTube. Search for “aging matters”.

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My son was explaining to me how getting drugs across the blood-brain barrier is key to developing more successful therapies to treat (or prevent) central nervous system disorders like ALZ.

"...a good analogy is to think about a child’s ball pit: 'If you throw yourself in, you can get to the bottom — that’s like a regular cell membrane. But with the BBB, it’s like throwing yourself against a brick wall.' The wall is made up of closely packed brain endothelial cells, connected by tight junctions that prevent the passage of molecules and ions."

Source:
https://pharmaceutical-journal.com/article/feature/a-barrier-to-progress-getting-drugs-to-the-brain
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Deepa's thinking is along the lines of Oliver Sacks before his death. He felt dementias were simply brains that had a life that was different from the societal norm. I saw a fascinating program last night on PBS about a young man with schizophrenia fighting guardianship by the state (along with his father). The drugs were making him so much worse. What we don't know about the mind is A LOT. What we do know is that society as a whole doesn't care enough about those beset with conditions that make their minds different--that cost to make their lives quality would be enormous and there is little determination to change this.
Have you ever read Jean Hegland's book, Still Time? It is about a Shakespearean Professor who gets dementia, and is told from his point of view. Hegland had volunteered for years with elderly with dementia, and her thought ran along these lines, as well. One of my favorite books; won't let it out of my library.
When my brother got his dx. of probable early Lewy's Dementia, and until his death, my bro was so rational in telling me about his mind, what he saw in hallucinations, what he felt when symptoms hit, how his eyes literally saw the world more and more differently, and it was absolutely amazing to me.
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Thank you for posting!
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