Does the diagnosis matter?

bennymom · April 16

my mom was diagnosed with FT dementia 7 years ago. At that time, she was still living in IL with my dad.

since then, her condition has progressed to the point where we decided to move her to MC.

One of my to-do items along with the move was to get her an appointment to be seen by a neurologist again and reevaluate. But at this point, I’m not sure how much value that has.

She is legally blind, hard of hearing, can’t figure out how to use hearing aids because of dementia so social engagement is difficult. She is depressed, has stopped eating, or drinking, and seems to be having difficulty swallowing. Fortunately, she is still ambulatory and continent.

I’m wondering whether and when the diagnosis makes a difference. I’d rather not subject her to unnecessary visits or treatment treatments. any thoughts?

harshedbuzz · April 16

@bennymom

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

IMO, getting a full evaluation is important earlier in the disease, especially for those on the younger side. Assuming she has that, continuing neurology appointments may not be useful for you. Some folks find value in seeing a neurologist for medication and support, some don't.

Dad had behavior issues and was treated by geripsych so we decided to discontinue the annual neurology appointments which were inconvenient, upsetting and brought little information to the party. A friend's mom was in her early-90s when she started with symptoms and was managed entirely by their PCP.

Is the MCF asking for the evaluation ahead of or as a requirement for admission? I ask because many MCFs cherry-pick residents for the pleasantly befuddled. Some diagnoses have a reputation for challenging behaviors and might not offer a place to someone with one of those diagnoses. Dad was rejected by mom's first choice based on his alcohol-related dementia's potential behaviors which had already faded by the time she sought placement. At the place that did accept him, they had a policy of limiting their FTD residents to one per neighborhood because their experience was that they often needed more hands-on than the average resident.

HB

terei · April 16

I doubt whether the stress of another dr appointment would be worth any new information they would give you. The way you are describing the situation, I would be more likely to call and have her accessed for hospice. Sometimes when caregivers are attending their LO on a daily basis it is not clear to them how debilitated the PWD is because the decline has come gradually over years. Someone accessing her condition will have an objective view of her condition

H1235 · April 16

Welcome. I agree with the others. Sadly there is not much to be done after diagnosis. I think it’s important she has a doctor who is knowledgeable of dementia and willing to prescribe medication for symptoms (anxiety, depression, insomnia…). If you are thinking you may get more detailed information on where she is at in her progression, I wouldn’t count on it. Doctors tend to use the 3 stage model and to be honest, you and your dad know her better than the doctor (unless a long evaluation were done, but that would be hard on her and serve no purpose). I will attach the staging tool that most people here like to use. Im not quite sure how accurate it is for ftd. My mom has vascular dementia and I find a few things are a bit off with it, but it’s still helpful.

April23 · April 16

Personally I don't think a neuro eval will have much benefit at this stage. As dementia progresses, all types begin to look the same and can even overlap. Medication to slow progression would not be helpful at this point. My dad began seeing a geriatric physician once he moved to MC and I felt she was more knowledgeable than his previous neurologist.

Grenah · April 16

My mother had an evaluation with a neuropsychologist last year. The dementia had just reared its head. She was subjected to about one hour of strangers asking her questions. One hour was all she would put up with. I questioned the benefit of getting her there, trying to explain what this was and leaving her there. In the long run does it matter whether it is LATE, vascular or something else. The reality is the same. Some varieties progress faster than others, the vascular effects the brain differently. It's all learning to navigate this new reality and retaining some sense of self and sanity. Her neurologist is about 90 years old, seriously. I come here a lot.

SDianeL · 3:44AM

I agree that a Neurologist evaluation won’t help. I would get a Geriatric Psychiatrist involved if she needs medication for anxiety or agitation. She needs to be evaluated by a Speech Therapist for a swallow test. Aspiration pneumonia is common in dementia patients who have swallowing difficulties. With not eating and swallowing problems she may be in Stage 7 so I would have hospice evaluate her. Please don’t wait. 💜

Does the diagnosis matter?

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