Unknown dementia

ltbub0418 · July 23

So DD bloodwork does not indicate Alzheimer’s and his MRI shows moderate atrophy of the hippocampus and mild atrophy of the brain overall. So while he has all the symptoms of Stage 4 dementia we don’t know what is causing it which makes it even harder to plan for future care. My research leads me to believe that he has VD. His hx of HTN, Type 2 diabetes, high cholesterol and former smoker and all of his current symptoms & his negative testing for Alz. Our next appointment with the geriatric doctor is 8/27.
Are there any other specialists that I should be seeking ? Has anyone else had to navigate this path ?
Thank you for any advice.

H1235 · July 23

My mom was diagnosed with vascular dementia. I think the diagnosis was really a matter of ruling other types out rather than any test to give a definitive diagnosis. Moms memory has been the lest affected. She had poor judgment, confusion, forgetting how to do things, lack of empathy, unsteady on her feet, change in apatite, depression, anxiety and of course anosognosia. She thinks there is nothing wrong with her and doesn’t want to cooperate. With vascular dementia the symptoms really depend on the part of the brain affected. Mom has struggled with incontinence much earlier on than others here. I think I read that was fairly common. There was no specialist specifically for vascular dementia that we saw. We were told there is no treatment. The best that can be done are things that are heart healthy. Exercise, healthy diet, keep blood pressure under control, no smoking (the usual stuff). Unfortunately mom wants no part of exercising and she eats what she wants and the doctor just increases meditation for her diabetes as needed. In the beginning I expected her to do everything she could, but she just doesn’t understand the importance and it’s not worth fighting her over. It took me a while to accept that trying to force her to do certain things was impossible and just made her angry. I find the dbat tool is probably not as accurate for mom, since memory loss is such a big part of Alzheimer’s and not as pronounced for mom. It’s my understanding it usually progresses in steps vs a steady decline, but mom was diagnosed 3 1/2 years ago and there has still been no significant decline. We were told an average life expectancy of 4-5 years. She has a whole long list of other health issues, so who knows. I feel a bit like there is an anvil over my head waiting and wondering when this step will happen. I believe there is someone here who’s lo was on year 10 with vascular dementia. I’m not so sure that’s a good thing.

harshedbuzz · July 23

@ltbub0418

Given your dad's medical history, VD is a likely form of dementia. It's the second most common form and other types present someone differently in the earlier stages.

IMO, once a doctor has ruled out other conditions that can mimic dementia that have the potential to be treated, knowing the specific kind of dementia is useful but not critical. The reality is that the later stages are quite similar. You might get more insight if your dad had a longer neuropsych assessment with a geriatric psychologist.

If you dad has any depression (often seen as irritation in men), anxiety of agitation, it would be useful to get a geriatric psychiatrist on your team. They are the experts in managing psychoactive meds to provide relief without sedation.

Planning for the future in terms of pacing yourself as a caregiver, budgeting finite assets for care and anticipating next stages is a challenge across all dementias as the patterns and averages won't necessarily apply to the individual. Dementia is a challenge for the Type-A planners among us.

Two features of VD that are different than Alzheimer's:

Alzheimer's tends to progress in a slower steady pace— think a ramp compared to VD which tends to progress in a series of plateaus and significant declines. Serious illness, injury, hospitalizations and anesthesia can cause a PWD to progress into next stage or even bypass some. My dad and aunt both had dementia at the same time. Dad's (Alz & WKS) decline was glacial in the early stages, as he lost skills they seemed to flicker for a time before they were permanently gone. Auntie (VD) would lose her skills more suddenly— her today/gone tomorrow but then she'd have a period where she remained stable.

Life expectancy at time of diagnosis is 4-5 years average for VD vs 4-8 for Alzheimer's. Women tend to live a bit longer as a group. Medical conditions and accidents can impact life expectancy; sometimes LOs pass from some other ailment before the end stages which can sometimes be a blessing. Dad died from pneumonia while he was still semi-ambulatory and verbal which pared him stage 7. Auntie spent 2 horrible years in stage 7 which was painful all around.

The above numbers are averages. There are outliers. YMMV. I saw changes in dad as early as 2005 and obvious memory issues by 2008, he was diagnosed in late 2016 and died 18 months later. In contrast, Auntie was diagnosed in 2008 (likely had issues as early as 2003 based on cleaning out her home and comments her late DH made); she died 3 months before my dad did.

I'm sorry your in this place.
HB

Unknown dementia

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