How to discern whether symptoms are due to dementia or other issues?

secondcor521

Hi all.

My Dad is 88, lives in MC, diagnosed with mixed Alz/vascular.

I tend to be a worrier.

Over the past two or three months, he has shown progressive symptoms that worried me: He is sleeping more. He is skipping meals. I think he has lost some weight (about 7% of body weight). He's generally weaker and has gone from a one-skilled-person or two-person transfer to it-probably-takes-three transfer and sometimes they use a lift if one is handy. His bladder control is diminishing. He's falling a lot (the MC place does their best, but I think it's inherently impossible to prevent falls entirely).

Aside from the dementia, he has had recurrent UTIs, which led to the discovery of a kidney stone, which we decided to have the doctor remove. So he's gone through infections, two general anesthesia applications, a stent removal, and antibiotics which have resulted as a side effect diarrhea, which in turn leads to some dehydration. The UTIs started a year or two ago, but the kidney stone etc. has been in the last three months.

One point of view is that the symptoms mentioned above are due to worsening dementia and might imply that hospice is on the horizon somewhere. I subscribe to this view.

Another point of view, which the MC head nurse thinks is the case, is that the symptoms mentioned above are all related to and knock on effects from the kidney stone. She's an RN working at a MC place, and she is generally very trustworthy and smart and good. And she's obviously seen a lot of patients go through her place (she's been there for years).

So the question: How do we tell, if we even can, which point of view is more likely the correct one? I suppose we'll be able to tell in retrospect at some point in the future, and maybe that's the best answer anyone has when guessing about the future. And since the kidney stone is now gone, in theory his progress or not over the next few weeks may be indicative. But I was hoping maybe someone has some heuristics for how to tell when something is non-curable-and-progressive dementia progression and when it's another separate thing that might-be-transitory-or-could-be-fixed.

I'm curious because I guess I think knowing the answer to this question might help me emotionally prepare for the more likely outcome.

M1

Welcome to the forum. I don't think your question is really answerable. But: look at the big picture. He's at the end of his life. His ability to bounce back is negligible. The weight loss is ominous. I'd ask for a hospice evaluation now (he'll qualify). Better to be prepared that his time is limited and be pleasantly surprised by any good day than the other way around.

secondcor521

Thanks. I've been here for a bit but I seldom post because mostly we've been doing OK with everything (and/or have local resources).

The weight loss is my estimate - they're supposed to weigh him monthly and for various reasons that hasn't happened regularly - either he declined to be weighed, or he was transferring from AL to MC, or or or. But I think he's basically dropped from about 215 to 200 over that time frame. He was overweight to begin with but I don't think that lessens the severity of the weight loss.

The RN I referred to is in the process of getting PT ordered for my Dad to help with the weakness and the transfers. She mentioned today that if the PT doesn't help him improve that it may be time for hospice (and that any PT "failure" would help him qualify).

Hospice would make some things harder and some things easier. I'm sure people here can empathize.

Quilting brings calm

Is everything due to progression of dementia? Maybe… and maybe part of it is due to his being 88. Regardless of the reason, his health may never improve and may just keep declining. I would call in hospice and stop treatment other than for comfort reasons.

harshedbuzz

@secondcor521

It sounds like you and he have had a rough couple of months.

I agree that calling hospice in now seems appropriate. What are your reservations? Are they treatment related? Often, UTIs are treated with antibiotics if only for symptom relief. And these is an option to go to the ER and temporarily go off hospice if you choose to. If you were to elect hospice and he began to improve over time, he might be dismissed from services.

I don't think you'll ever untangle the precise cause of his most recent decline. Given that he has 2 different kinds of dementia, each with its own typical pattern of decline it would be hard to sus out anyway. Generally Alz has a steady and often slower decline than VD which tends to be in the form of plateaus and steeper declines. With hospitalizations, infections and anesthesia you can often see a bounce back once the PWD is recovered and back in the regular care routine, but it is seldom to their previous baseline.

IME, PT tends not to be especially effective beyond a certain point in dementia. Getting him stronger to improve his ability to participate in his transfers could make the task of caring for him easier for staff and also safer for both them and him.

HB

MN Chickadee

That kind of intertwined symptoms/outcomes from dementia with other health issues is really common. It becomes an un-answerable chicken or egg situation as to why things progress, and in the end doesn't really matter because the outcome is the same. People in your dad's condition and age don't tend to bounce back from declines. The broken brain makes the rest of the body more frail, and there isn't usually ways to reverse that. I'd be surprised if the PT helped, but no harm in trying. I would get hospice involved asap as they are an added layer of service and support for both of you. It doesn't mean he will be gone in days or weeks, some people hang on a long time, but it will assist in making however many days he has left as comfortable as possible. It sounds like he would qualify now.

secondcor521

Thanks for the additional replies, they are definitely helpful.

@harshedbuzz, I don't - and my sisters don't AFAIK - have any reservations about hospice. My Mom was on hospice for about the last 9 months or so of her life. It worked well for us then, and we understand about how it works.

It has more to do with how long he has left and the associated emotional response and me processing my grief. (As his financial POA, there are also financial ramifications, but those are, in the big scheme of things, relatively minor.)

Before having my earlier conversation with the RN, I personally was thinking he only had a year or two left. The RN said she thought most of his symptoms were related to the kidney stone and thus the UTIs, and once we got those addressed she thought he was more in the 3- to 5-year range. That really surprised me and startled me for several reasons.

First, I really thought she was mistaken, but then again, I thought, she's the expert and has much more experience and knowledge. And she seemed and seems capable and trustworthy and a straight shooter. I think the only edge I have is that I know my Dad better than she does and I've watched him and his health pretty closely over the past five years or so.

Second, the time frame was different enough to where I sort of had to recalibrate my worldview and the decisions we were making with regards to his care and finances and so forth. Before having the kidney stone removed, we had conversations about whether it was a good idea or not. Basically, if it improved his QOL and he would live another 1.5 years or more, it was a slam dunk to do it. But if it was putting him through that process for a more "meh" outcome and he'd only live another 6 months to a year anyway, then probably not worth it.

I think the PT angle is several-fold. First, one of my sisters is a PT and the other is a family practice doc. So the RN sort of said that ordering the PT for my Dad was intended to demonstrate to my sisters (and me) that my Dad's care team had done all they could. Second, obviously as you state, it could help with safety and QOL - any strength he gains probably reduces his chance of falls, which are probably one of the bigger dangers to his health and QOL now. Finally, if he gets the PT and doesn't improve, then that may both indicate hospice and improve his eligibility for it.

I agree with you all, though, the PT will probably only help marginally and temporarily. But I do think he has more than days or weeks left just based on how he's doing (I look at the ABAT checklist to try to be objective). Almost certainly months, and maybe even a year or two. Probably not three to five years as the RN was thinking. He's somewhere in the stage 5 or stage 6 area and has specific instructions in his health care documents that he doesn't want feeding help so any stage 7 would probably be very short.

There is sort of a feeling one gets about these things, at least for me, after having gone through my Mom's passing (8 years ago from something else - not dementia). I wasn't much for Mother's Day gifts up until the last year or two. My sisters started visiting her more. She went on hospice. Etc.

Now with my Dad, I see my sisters visiting more. I asked the facility about hospice a while ago and they said, "Oh definitely not yet" then. Then with his kidney stone, we started discussing his longevity and it was more of a "hospice maybe soon but not now" kind of thing. Now with the recommended PT, the vibe is "maybe hospice if the PT doesn't work". Just like a thunderstorm on the horizon, you can tell the rain is coming. You can see it and almost feel it.

harshedbuzz

@secondcor521

That all makes sense. The uncertainty of the progression is a nightmare. Pacing yourself in terms of putting your own life on hold, preparing emotionally for the grief to come, and trying to manage finances to keep your LO getting appropriate care would be easier with a crystal ball.

HB

SDianeL

call in Hospice now. My husband had mixed Alzheimer’s & vascular dementia. The last 6 weeks he went downhill fast. He couldn’t feed himself & had swallowing problems which caused aspiration. He passed away August 12. The facility implemented hospice protocols on Sunday. Things happened so quickly I told them not to call Hospice. (They gave me the choice). He was getting excellent care so I trusted them. The people on this group advised me to have Hospice come in 4 weeks ago but I didn’t for all the reasons you listed. Better to have them. PT won’t help in my opinion. So sorry.