Readers share experiences with Alzheimer’s, and reactions to our story

WITH 6 MILLION Americans living with Alzheimer’s disease, it’s unusual for any family to be untouched by the memory-robbing illness. And as life expectancies rise, older people (myself included!) are keen to do whatever possible to prevent it.

We heard from folks on both sides of the equation in response to our April 16 cover story on dementia and the Adult Changes in Thought study.

One reader described how her mother was mistakenly assumed to have the beginnings of dementia, when her symptoms — including congestive heart failure — were actually caused by an overload of iron in her blood.

A caller chided me, gently and thoughtfully, for failing to mention the role of diet in Alzheimer’s prevention. There are many studies that link lower incidence of the disease to the Mediterranean diets and similar regimens rich in vegetables and grains. But other studies show no impact. Overall, the evidence wasn’t robust enough to convince the expert Lancet Commission to include diet on its list of risk factors.

“Nutrition and dietary components are challenging to research with controversies still raging around the role of many micronutrients and health outcomes in dementia,” the group’s 2020 report concludes. But several large-scale studies are in the works that could provide more definitive guidelines within a few years — and it’s probably a good idea to eat healthier, anyway.

Here’s more of what readers had to say. Thanks to everyone who reached out, and please, stay in touch.

New information

I suppose it would seem a little strange to say I really “enjoyed” your recent article on dementia. However, it was so informative, and I was excited to learn about all the wonderful research that is being conducted right here in Washington and King County, where I live (Sammamish). Thank you for doing such a good job of explaining some of the signs of the beginnings of dementia and some ideas of things that can be done to prevent the onset or at least delay it, if possible. Also, the research that ACT is doing at UW is very impressive and is new information for me. Reading all this has made me, at least, consider donating my brain, not too soon (ha!).
— Mary Ziegler, Sammamish

Don’t forget the kinless

My husband had dementia, probably Lewy Body, and it was a 10-year trip through hell for me. I understand the advice given: more exercise, no smoking, etc. I am now facing the fact that my best friend has some kind of dementia. It’s difficult for both of us. Neither of us has family. So it’s hard to establish connections with family. 

It is important for this discussion on dementia to be front and center. Do you realize how few people realize that dementia exists in a deeply personal way and is extremely expensive when the victim can no longer live alone or in his/her home?  

Please remember that as we age, we have fewer connections with others. Also, not everyone is blessed with family. My friend is a single woman, and my husband and I were both only children. He had cousins, none of whom visited him much at all. We received NO support from them. 

Perhaps you would be interested in writing about kinless people. The NYT has acknowledged this as an issue. There are many Americans who fit into that category. I would guess that there are several thousand in Seattle.
— Nancy Simsons, Seattle