I’m seeking info on any research or quality reporting on the subjective experience of dementia sufferers. IOW, what do they think of their condition? How aware are they as they descend the functional ladder? Once mostly out of it, is their blank time internally placid, internally turbulent, or simply absent? Does anyone really know?
I’m mostly interested in ordinary senile dementia, with a side helping of TIA- and stroke-related brain dysfunction. Not specifically interested in Alzheimer’s but there might be some partly relevant info there.
Why my interest?
My very aged MIL seems finally to be following her elder (now deceased) siblings into the state where the body outlives the mind by a couple years. It’s comparatively minor right now, but her recent memory is crap and her ability to decide anything beyond what’s for lunch is getting shakier. OTOH, she’s totally involved in the social intrigues at her senior living facility and can regale you with songs and tales and readings and knowledge accumulated over many decades. Just not very much from the last year or so. She can also tell you all the latest sensationalist crap she found on CNN or cnn.com. For a few minutes. Until it gets entangled with other half-remembered half-understood news-bits.
So far when we talk about her condition she’s pretty matter of fact about feeling herself slipping. She’s not happy about it, but she’s accepting; so far it clearly beats the alternative in her view.
OTOH, when she’s in her maximally confused state (which is still pretty good except for short term memory) she seems to not be much aware she’s confused. When fully lucid she’s pretty scornful of the many residents who’re kinda loopy but not incompetently senile. Once she recognizes herself in that category her morale may take a huge hit.
When (probably not if) that confusion becomes her situation most days most of the time I’m hoping her experience remains better for her than the alternative. Hence my questions.
I’m sure there are hundreds of anecdotes to be shared here; I’m especially interested in what the caregivers or research psych people have to say.
You did not say but are you sure she has dementia? I thought my mother might be slipping into dementia until they found the brain tumor. Make sure the woman is seeing a doctor.
@dflower: Nice to see somebody respond. Thank you. This was my least successful OP to date: 250 views & zero posts until about an hour ago.
A tumor is always a possibility. She reports events whose symptoms match TIA’s AKA “mini-strokes”. Which she always tells us about a month or more after the fact. We’ve tried to impress on her that modern medicine can help a lot with a stroke. But only in the first tens of minutes. So call for help pronto.
I doubt it’s sinking in. She has a lifelong history of lying to doctors in an effort to get them to say what she wants them to say. Fortunately that’s never in service of drug-seeking. Rather the opposite.
One of the things we’re doing right now is injecting ourselves, with her grudging assent, into her medical care. What little of it she chooses to want.
@mikecurtis: Thanks; that’s an awesome find.
I started getting involved in my ex wife’s life about 1 year ago as her dementia seemed to be progressing to the point she could no longer stay alone. It culminated several months ago with her being put into a convalescent home with her faculties degraded to the point of not knowing anyone and a memory shorter than 30 seconds literally. Today she is fully functional with only very minor signs of dementia, her memory is as sharp as ever but she has problems learning things like the remote on the TV or some slightly out of the ordinary tasks on her computer she needs to perform.
Huge improvement. I traced it back to problems with her medications coupled with depression from loneliness. Family was not stepping up to the plate as much as I felt they should but really not for me to judge. I spend about 5 hours a day around her now just hanging out and talking while I do my work.
A Doper named Quasimodem was diagnosed with Alzheimer’s some years back. I haven’t yet found the post where he first announced this (he has over 13,000 posts). I’ll give a few links to updates below. Quasimodem set out to document his decline and to answer questions as best he could for as long as he could.
Some Dopers found some of Quasi’s subsequent posts to be odd or offensive and were vocal about wanting him to stop posting and leave the board. I consider this to be the most shameful behavior I’ve seen on this board.
Early on, on some level, she knew her way of thinking wasn’t quite right. My mother, was a very verbally astute woman who read a lot, knew a lot of things, did a lot of things…and suddenly there she was telling you something and either forgetting what’s she was telling you midstream or stumbling over a word or phrase that was right on the tip of her tongue but she couldn’t quite catch it unless you helped her.
The other thing was forgetting what certain things were and/or what they were used for. Both her parents were chefs, so my mother and her brothers literally grew up in a restaurant kitchen and learned to cook early on. While I was growing up she could make almost anything without a recipe (“because it’s all up here in my head”). Cooking was one of the functions she lost early on, due to the executive functions involved in such. She attempted to make a chicken and rice dish – a dish that was one of her mainstays – and forgot to cook the rice in broth, forgot how to debone the chicken, had no idea what tongs were (“You use these to flip the chicken in the pan, Mom – oh wait, why is the chicken raw? Oh, I see, you forgot to turn on the burner.”)
The one thing I was told to never to do was to belittle her for the forgetfulness. Instead, I had to learn to be matter-of-fact, especially in the early days. As she deteriorated, it helped to put myself in her reality, especially when she ceased recognizing me as her daughter and I became instead that long-ago friend she couldn’t quite place.
ALZ is a different path of decline than senile dementia. But both are tragic in their own way. I’m sorry you had to ride that one in; it can’t have been pleasant for anyone involved. Most particularly not for your Mom.
So far this has been easy. We can hear the waterfall in the distance but can’t see the spray yet, much less see the precipice.
When she can’t generate the word for something (or more often, someone) I debate between supplying it for her, calling attention to the fact we both know she’s forgotten something that healthy people don’t forget, versus leaving her be to dissemble past her gap and perhaps save her some dignity if she thinks she’s fooled us into not noticing.
So far I supply the word if it’s key to the flow of conversation, but if it’s immaterial or a name of somebody we all know who she’s referring to, I let it pass. That seems kindest.
A caregiver I know says the key to dealing with situations like these is redirection and time. While the person is struggling for a word or a name redirect them by asking a pertinent question about the person or word, or tell a little story of your own connection to the person or word. This gives them the time to come up with the word on their own or allows the conversation to continue without it. and sometimes you can use the word or name without it appearing as if you’re helping them.
And I don’t know if you’re a fan of podcasts or NPR but Radiolab and This American Life often tackle subjects of aging and memory from the point of view of the people on the frontlines.
Have you already looked at the resources at the Alzheimer’s Foundation? I’m not finding a lot that directly addresses your question, but there may be some information that’s useful.
I’ll dig around and see what else I can find. Many years ago, before switching to tech, I worked in pharmaceutical research. The first trials I worked on were with Alzheimer’s patients. I’ll see if I can re-engage anyone from that network and find anything useful.
She’s definitely (as definite as anyone can be) not got Alzheimer’s.
She was going strong at 90 and it was only the TIA at 91-1/2 that put a real crimp in her fresh memory storage ability. Alzheimer’s has a much earlier onset. She sailed through that era just fine. As did her siblings & parents.
Still and all, the tactics for handling it as a caregiver are probably similar, especially at my amateur level.
As to pharma, I read an active drug discovery blog: http://blogs.sciencemag.org/pipeline/ It’s way beyond my ability to understand the details, but it’s fascinating stuff written by an insightful dude. You might enjoy it too for old-time’s sake. In his version of events, Alzheimer’s is still the immovable cliff the ships of Pharma keep dashing themselves uselessly against.
I’m definitely not firing on all cylinders. Fighting a bug. :smack: Yes, you quite clearly stated that you were interested in dementia, not Alzheimer’s.
The research was done through a Aging group at Stanford. I’ll keep digging. Unfortunately, the lead I worked with seems to have retired. I’m poking around to see what else I can dig up.
Are you interested in ongoing research (just to inform yourself), or trial opportunities (nationwide)? I am finding those and could send those along.
When I wrote the OP I was just thinking info for me. But trials are an interesting side issue. I know for the last few years as her siblings went down the tubes she got real interested in every quack magazine article on “grapefruit as miracle anti-brain-aging food” or somesuch.
Despite her resistance to many things medical she might get enthused for something like that . As might we when it gets to the point we’re deciding for her.