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

[edw519]

This is slightly off topic, but not really, because it's still science. This is one of the smartest groups I know, so maybe I can get help with a personal issue. I am specifically NOT addressing this to a board that specializes on this topic, because I seek "out of the box" hacker-like thinking.

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.

[lee]

For what this is worth, I cared for both of my parents through the end of their lives and found something interesting and here's how I try to assemble it in my mind. There seems to be a core connection between people that doesn't change over time. For example, when I met several cousins when I was visiting my mother's country when I was six, there were a few that I had a terrific connection with. Turns out that many years later, when in my twenties, I went back and met up with the plethora of cousins I have there, those same ones I connected well with when I was six were the same ones I connected well with as an adult.

How this plays out with someone who has lost a lot of themselves to dementia came into play with my parents when they could no longer recognize me. It took a lot of mind games on my end to think my way around this, but you can still have fun with them. The connection is still there, but you may have to hunt a bit to find it. If they're hallucinating, think of them as being someone who has taken a lot of hallucinogens and play with them, or if they have no time continuity, love them like a beloved pet who won't remember what you're doing in five minutes (or whatever it takes) and find that connection and experience joy together.

"Hey Mum, do you know who I am?" "Sure I do." "Okay then, who am I?" "Ahhh, you got me on that one." [cue laugh track]

[Actually both parents tried to fake their way out of this one.]

The truth is that you can still enjoy each other throughout this time because the connection seems to still be there, even though all of the overlays the mind and personality provides is not. It might be a way for a child who has been having conflicts can reunite, and while there will never be any closure over conflicts, there still might be peace and they might find the love that they missed.

One of the good things that can happen is that old fears can disappear with dementia. Sourpusses become cheerful. Sedentary people start taking walks and their health improves. People lose their obsessions. They'll often remember lyrics.

My heart goes out to you, because there's no way that this can be easy. You can use this opportunity to forge deeper relationships with your siblings and invest in the dynamics of the family in the future. I wish you the very best.

[iamelgringo]

My day job is as an ER nurse, so I'm afraid that I'll only be able to give "inside the box" advice. Although, I don't think that you're going to hurt anything if you try herbal stuff. But, the problem is, with the brain, once the damage is done, it's done, because the hardware/software is broken. And, certainly, if you want a second or even third opinion, by all means, go ahead and get them. Be sure you've gotten an MRI at some point, and seen a Neurologist. There are a few diseases like heavy metal poisoning that can cause similar symptoms. But again, even with those, once the damage is done, it's done, and there isn't much you can do when it's rea

About the only good thing about Alzheimer's is that the person really doesn't suffer much, because they forget what they are going through. Although periods of agitation and frustration are common.

The worst thing about Alzheimer's is it's effect on the family. It's known as "The long goodbye" because it is such a slow, debilitating disease. The family slowly sees the loved one disappear week after week. It is heart wrenching.

Keeping the patient as mentally active as possible has been proven to delay the progression of the disease. Surrounding the patient with familiar objects that they've had around for years can be reassuring. Some of the best dementia units in skilled nursing facilities that I've seen have an "antique row" or a hallway filled with antiques" that the patients can wander back and forth in that often reassures them.

But, probably the best thing that can be done for the patient as well as the family, is to sit around and talk about memories. Talk about the good times, and tell stories about each other. It helps the family to grieve and because the long term memories are the last to go, it helps give the patient a sense of the familiar, and that's usually reassuring.

Hang in there, man. It's tough.

[falsestprophet]

"About the only good thing about Alzheimer's is that the person really doesn't suffer much, because they forget what they are going through. Although periods of agitation and frustration are common."

In my experience, that is one of the new things they remember.

[dpatru]

I remember reading some months back on reddit I think that exercise has been shown to promote neuron growth in rats. I searched google just now and found this: http://www.paulspoerry.com/index.php/2007/09/14/excersize-ma...

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.

[matth]

I used to write a daily Alzheimer's newsletter for a small home-business based in Cummings, GA. Part of my job was to cover upcoming research studies, recent findings, and that sort of thing.

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.

[Tichy]

I recently read the book "Super Crunchers", which mentioned a medical database called Isabel. By googling I just found this link: http://www.openclinical.org/aisp_isabel.html

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

[pocketofposies]

The bad news is that currently available meds are only mildly effective, and by "effective" I mean effective in prolonging disease progression.

The good news is that there is a ton of research being done (I work in this area). Some people are a bit squeamish about getting involved in clinical trials, but if I were in your position, you can bet I would enroll my parent in a trial. The best resource for finding what's enrolling in your area is www.clinicaltrials.gov.

Elan is about to start a phase III trial on their Alzheimer's vaccine, Bapineuzumab, and it has generated quite a bit of buzz.

http://www.reuters.com/article/healthNews/idUSL2153046720070...

As I said, I work in this area and obviously carry a bias. However, I did not see anyone else suggest the possibility of clinical trials, so I thought I should throw it out there to consider among the other options.

[skmurphy]

Here is a recent research result suggesting a possible mechanism of action for DHA (a component of fish oil) lowering the risk of onset for Alzheimers. It's not clear that it would be useful in a case of extreme dementia but DHA increases the level of a brain protein, LR11 (also known as SorLA), that helps clear the brain of amyloid precursor protein(APP), essential for production of the brain-gumming beta-amyloid plaque that clogs the brains of people with Alzheimer's disease.

http://www.jneurosci.org/cgi/content/abstract/27/52/14299

http://www.webmd.com/alzheimers/news/20071226/fish-oil-preve...

http://www.scientificblogging.com/news_releases/lr11_and_why...

[mhb]

You might like to read this article which discusses the specialist/generalist issue: http://www.newyorker.com/reporting/2007/04/30/070430fa_fact_...

[skmurphy]

Alzheimers is heartbreaking and I don't want to post anything that would give you false hope. These folks are running some clinical trials with curcumin / Turmeric & DHA http://alzheimer.neurology.ucla.edu/trials.html

these are also available over the counter, so in consultation with her doctor you might have her try one or both of these.

Another source for alternative medicine info is Life Extension Foundation, here is their page for Alzheimers

http://www.lef.org/protocols/neurological/alzheimers_disease...

[divia]

I see it has been mentioned, but I'd also like to recommend omega-3 supplementation. Seth Roberts has experimented a lot and recommends a dose of 2-3 tablespoons every day. You can look at his blog if you're interested: http://www.blog.sethroberts.net/category/nutrition/omega-3/.

[amichail]

See:

http://www.cs.rochester.edu/u/kautz/ac/

[rms]

http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=R...

This is based on computational modeling only and it is very early research, but there still might be something there.

[bzerkfury]

You should try the authors of hippocratech.org

They might be able to refer you to health websites or answer your questions. They only write about finding health resources and they're drug specialists themselves.

Doesn't hurt to try

[edw519]

Thank all of you for your input! I will forward this link to my brothers and sisters and I'm sure we'll follow up on alot of this right away. Spending "quality time" with her and bringing her fresh fruit are no-brainers. I also thought about hiding a reefer in her pack of Marlboro's on the way to the all-you-can-eat buffet. I dunno about that one.

My instincts were right. In less than 24 hours, I got high quality feedback from this group that would have taken much longer googling. (Perhaps there's a business opportunity hidden here somewhere: Need Smart Answers? Ask the Hackers.)

[tphyahoo]

My father (a psychiatrist and researcher) believes nicotine is a prophylactic against alzheimer -- he now chews nicorette, though he never smoked. This probably won't help your mother, but if you're worried about coming down with alzheimer's yourself you might look into it.

A lot of people in my family unfortunately got this disease. I don't know of anything that can reverse its course and I've looked. There are some drugs that are supposed to help a bit but no silver bullet. Google is your friend here (can't recall what they're called, but there are ads for them in all the psychiatric trade journals.)

So much for the wonders of science.

I further suggest you might join an alzheimer's support network to see how other people cope with a loved one that has this. I'm sorry to say, in my experience, alzheimer's can almost be harder on the caregiver than on the afflicted. So your top priority should be taking care of yourself, so that when you are around your mom you can give her the love and affection she needs and be tolerant of her lapses.

[downer]

Speculatively, Quercetin (a bioflavonoid, available as a supplement) might help:

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.