Ask YC: Suggestions for Loved One's Dementia/Alzheimer's

My mother is suffering from extreme dementia with a probable cause of Alzheimer's (her physician's words). She has reached the point where she can no longer care for herself, so she is now in a skilled nursing facility. She has stabilized and is receiving excellent personal and medical care.

She is 77 years old, ambulatory and active, lucid about 80% of the time, recognizes everyone, and interacts fairly well. She has a lot of trouble verbalizing and gets confused quite often. We are also starting to see classic memory loss.

My brothers and sisters and I intend to take full advantage of the expertise of her physicians whose specialty is "geriatric care".

Here is my concern. Just like the blind men and the elephant, medical practitioners only have solutions to the problems they see all the time. Like many other types of problems, in health care, sometimes you have to go "outside the box" to address things more effectively. I know many people who have helped loved ones with many different health challenges by going outside the system. But we know nothing about this condition.

In 2009, I don't want to say, "Gee, I wish I would have done something back in 2007."

Is there anything we should be aware of that our doctors don't know about (or won't tell us)? I plan to email this link to my brothers and sisters, so any comments, suggestions, or referrals would be greatly appreciated.

I think it is a kind of AI that seeks to extract medical knowledge from published medical research. So I think it is not just a search engine that would point you into the middle of incomprehensible scientific papers, it somehow helps you with diagnosis and treatments. (I haven't tried it myself)

Not sure how good it is, but as far as I have read, it is definitely a valid concern that individual doctors might not know about the latest research (where "latest" can actually be years and even decades). There was also recently another post on news.yc about the "Checklist", which might go into a similar vein: http://news.ycombinator.com/item?id=87167

https://www.alzinfo.org/newsarticle/templates/archivenewstem...

Alzheimer's is also speculatively related to CJD, i.e. mad cow. That is, many cases of Alzheimer's may actually be undiagnosed CJD. New application of existing drugs may help:

http://news.bbc.co.uk/1/hi/health/1490177.stm

Of course for prevention, and/or avoiding re-exposure, I'd avoid anything that came from a cow, or anything fed on cow parts (which pretty much means to avoid any animal product from a factory farm). U.S. food practices are exceedingly ill-advised.

Edit: I recall something about aluminum build-up in the brain, though I'm not sure of how well correlated it is.

http://www.straightdope.com/classics/a1_216a.html

Aluminum-free deodorants and baking powders are very easy considerations.

Music therapy seems to be developing as a respected treatment method. Anything that promotes a patient's creativity is highly recommended.

I can remember covering at least one positive story every week about Omega-3 and/or antioxidants.

Other than that keep your ear to the ground for upcoming research studies looking for participants.

I've been up for a couple days or something, so I'm losing my coherence here. E-mail me and I can put you in touch with some really good people who are more up-to-date on current progresses in the field than I am. They keep normal sleep hours, too.

Also, from my experience and from what I've heard/read from others, periodic fasting helps renew the body and slows aging.

So here are my suggestions as a non-expert: 1) Exercise as much as possible: at least an hour per day, the longer and more strenuous the better. Exercise in the sun and the open air is preferable. 2) Eat a simple vegetarian diet with lots of colorful fruits and vegetables. 3) Restrict calories, eat slightly less than needed. 4) Fast once a week. 5) Use the mind: converse, read, write. 6) Find something useful to do, a reason to live. Victor Frankl's experience in the concentration camp comes to mind: a person with a strong purpose can endure much. 7) Play music, sing, or at least listen to good music. 8) Avoid contact with cats, because of Toxoplasma gondii, a parasite that gets into the brain of its hosts and affects it.

To me, these all seem like common sense measures for good physical and mental health, maybe to you too, but I've been to nursing homes and hospitals where the patients are treated in the opposite way: kept sedentary and indoors, overfed greasy processed foods, relieved of responsibilities that give purpose, and fed an intellectual diet of TV. This regime seems designed to make a healthy person sick, not vice versa.