Road map to senile decline

November 1, 2008 7:29 AM

I've checked earlier posts about senile dementia, but have not found this specific request: recommendations of books or websites on the topic.

A good friend is dealing with his father's gradual decline into senile dementia, and not a "nice forgetful old man" dementia either but a mean, paranoid state of mind accompanied with a lot of anger and frustration over loss of function (e.g., he's been ascribing his loss of function to being poisoned by family members, and the like).

My friend is interested in sources of information about the typical progress of this condition and current information on possible treatments. He's not so interested in stuff about the caregiver experience.

posted by zadcat to health & fitness (8 comments total)

Very recently (on oct 11th and 18th) All in the Mind has devoted two programs to dementia. There's audio (podcast, streaming and download) and there's also a link towards a blog here.
posted by nicolin at 8:09 AM on November 1, 2008

Your friend would be well advised to pick up a copy of Understanding Dementia: A Primer of Diagnosis and Management, which you can find a lot of excerpts from on DementiaGuide.

The progress of the condition is pretty steady as I understand it, and except for a few unique types, there is no cure for the illness. There has however been recent progress with drugs used to slow the onset of the disease (specifically Cholinesterase inhibitors). My grandfather has been a patient in one of the leading programs experimenting with these.

Unfortunately for your friend, as disinterested as he may be in the caregiver experience, that really is the only treatment there is for the condition. And getting that part right is the kindest thing you can do for people crippled with this disease.
posted by allkindsoftime at 8:48 AM on November 1, 2008

It is not that he's uninterested in the caregiver experience. It's his life, 24/7, and he doesn't feel in the mood to be patronized by feel-good books about coping. He does need to know about, for example, proven strategies to convince the patient to take medicine, to relinquish driving, and so on.
posted by zadcat at 9:24 AM on November 1, 2008

This book, a million times.
posted by Acheman at 9:35 AM on November 1, 2008

Caring.com is an online community that focuses on eldercare.
posted by stuart_s at 12:38 PM on November 1, 2008

"The 36 Hour Day" has long been the bestseller in this category and is stocked in any decent bookstore.
posted by neuron at 7:15 PM on November 1, 2008

a mean, paranoid state of mind accompanied with a lot of anger and frustration

This is really important. There are three well-known movies about Alzheimer's so far: The Notebook, Iris, and Away From Her. I recommend all of them, even if the first is more of a sentimental romance, but they all share the quality of -- I would say -- sentimentalizing the experience. A few moments of unlucidity here and there serve to illustrate, perhaps some personal frustration while they're still relatively clear that they are losing function. But none shows someone who was a trial to live with even before they lost function.

We're struggling right now to cut my dad off from the bookkeeping, as he's really messed up their finances. This follows years of bullying my mom over money, so she's suddenly having to learn to do all this stuff at 71. And he's lashing out over every inroad we make, refusing to disclose information, and so forth.

That said, and not so interested in stuff about the caregiver experience, my mother is quite impressed with Mainstay, which is out of print and expensive. It's for spouses, but apparently has a lot of practical advice that would apply to anyone.

My friend is interested in sources of information about the typical progress of this condition and current information on possible treatments.

There are numerous places to get solid information such as the Alzheimer's Association or the Fisher Center for Alzheimer's Research. In some cases it is helpful to know more about a "nonstandard" dementia if that is the case, but there is a lot of overlap and the Alzheimer's groups and materials have most of the money so are easiest to find.

It really sounds as though your friend is being given no direction or support from his father's medical team, which I find unusual. Even a basic community health system will have some self-education resources, because this is a disease that requires the caregivers to take over medical decision-making. I would really press the father's doctor for some better direction in this area, as they would best know what is available locally and what your family qualifies for in terms of, e.g., home health care options.

I would also not discount the "feel-good" caregiver support aspects. Becoming a full-time caregiver will be a taxing transition for your friend and the family dynamics will change drastically. There is no shame in attending a group where you can discuss this stuff regularly and learn from others' experiences. It's also important to have someone to call when there is a serious crisis -- say, his father starts going for walks ... into other people's homes. This happened to the uncle of a client of mine. How do you react? What do you tell the "victims"? The police are likely to be minimally helpful and not more. And at the very least he should be aware of caregiver burnout and the potential for elder abuse. We are in early days and I can already see how frighteningly easily it could get to that point even for us.
posted by dhartung at 12:16 AM on November 2, 2008

dhartung, I'm not too clear on aspects of your response, or where some of those quotations came from, as they were not in my original post.

My friend has been living as a support system for his aging parents for quite some time. This isn't a sudden shift for him, but rather a gradual adjustment. Nobody is having to move house or change their lives suddenly over this – it's more that my friend is aware his dad is moving into uncharted territory and he needs to know where this is going.

Also, we are not in the United States. Friend's father has had doctors who have treated various physical ills but no doctor or "team" overseeing his overall condition, nor is he likely to be able to find such a thing in our current atmosphere of dire shortages of medical care. The condition itself, the paranoia and anger, are themselves a barrier (at the moment) to even beginning to seek treatment, and that's the very aspect my friend is, so to speak, trying to crack.

My friend is not at all interested in group therapy or the like. This isn't America and we're expected to be rather more stoical here, for good or ill.

Thanks for your detailed response, which I appreciate your taking the time to post.

Also, thanks to everyone else who posted.
posted by zadcat at 7:16 AM on November 2, 2008