What’s the point of diagnosis?

trottingalong

Six years ago my DH went through all the testing for Alzheimer’s. At the time it was inconclusive, MCI. His mother, grandfather, 3 aunts and two brothers had it. I helped care for his mother. He pretty much had minimal changes over the years. We both noticed mild decline, but it did not impact our lives a great deal. We both agree that noticeable changes are occurring now with short term memory and difficulty with comprehension and confusion. He can still fool people and he can function ok as long as our routine doesn’t change. He sees absolutely no point in being retested. It was grueling. We live in a remote area and must travel 7 hours to get to a testing facility. He doesn’t like to go far from our home. I’m with him. I don’t see any benefit to going through what we already know is happening. Does everyone choose to get tested and why? The neurologist told us there really wasn’t any test that can 100% say Alzheimer’s. And if they did give that diagnosis, what does it matter? It changes nothing.

Ed1937

I think the most important reason for a diagnosis is that some medications don't do well with Alzheimer's and some other dementias. They can make things worse instead of helping. And they need testing to see if there might be a treatable condition rather than dementia. Other than that, I don't see much benefit in a diagnosis. Unless it is early onset. Then it helps get disability.

M1

Agree. In some cases in which there are major behavioral issues or hallucinations, a diagnosis matters more because certain medications should be avoided. And early on, some testing is important to rule out treatable illnesses. But certainly in your situation and in many, it doesn't matter a whole lot.

trottingalong

Good point about medications. We do talk about it with our primary physician and we do review The medicines he is on with our doctor

SDianeL

My husband was diagnosed with possible vascular dementia from a CT scan. He can't have an MRI. I asked the Neurologist what difference would more testing make and she said none. There's no cure and they only manage the behaviors. You can learn so much on this forum. Also if you haven't read the book "The 36 Hour Day" it helped me a lot. You've already been through it with his Mother so you probably know what to expect except each person progresses differently.

FAHNJL

Disability if it's EO. That's our situation. DW is 64. But what difference does that even make when you're probably facing a Medicaid spend down? There are no silver linings here.

ghphotog

An "official" diagnosis will not make any difference in the long run but as other's have said there are different types of dementias and although all of those roads lead to the same place, some medications can do more harm than good. Communication between other doctors, PCPs and neuros is very important. Our PCP diagnosed my DW with fibromyalgia and put her on Amitriptyline, the Neuro put her on Memantine. The amitriptyline sent her into a spiral, the neuro said to take her off of it. She calmed down considerably after a week or so.

don't think one needs to endure one test after another unless there are suspicions that there could be something potentially treatable or reversible but that is completely and individual decision. It would however, be devastating to forgo basic testing and later find out something could've been done but now too late.

My Dw had and MRI, the report said there was overall atrophy including the hippocampus. The neuro said it was "consistent" with Alzheimer's and that's about as "official" as it gets for us.

storycrafter

My husband's first neuropsychology testing indicated MCI, unknown reason. At first it seemed that knowledge was of no benefit. Though he could no longer work at all, we had to start withdrawing funds from our retirement savings ten years before we'd planned. He lost his best earning years, at the peak of his highly skilled career. It completely derailed our lifelong financial plans.

But a few years later, and subsequent neuropsych re-tests over the years, it tells/told the doctor what kind of brain losses my dh was/is experiencing, and what meds were/are useful (providing significant quality of life). In other words, the first test simply provided a baseline against which, on down the road the doctor could compare and conclude what kind of dementia was developing. Over five years later, with the specific diagnosis finally in hand, - after seven years of misery, searching for answers, and depleting our savings - my dh was able to start to receive his SS. The neuropsych doctor has made some useful suggestions after seeing the new types of cognitive losses.

Wishing you luck. You're in good hands here. Everything useful I've learned in this forum.

harshedbuzz

My mother fought my suggestion to have dad evaluated for almost a decade. He had mixed dementia and one of the turned out to be a vitamin deficiency that was treatable. Had she been more proactive, he could have been treated and potentially recovered more cognition until his Alzheimer's worsened. Their quality of life would have been much better for longer.

HB

CStrope

I ask myself this same question. DH had 3 different doctors administer quick in-office cognitive tests because they were concerned. With HIPAA regulations, I was not aware of these tests. DH was a master at convincing me he was doing fine and that there was nothing wrong. Finally after about 3 years, I saw signs that he was not able to explain away. This time I took him to the doctor and he was diagnosed. So I often blame myself for not knowing earlier, but then ask myself what good would it have done. He was diagnosed with Alzheimer's and put on both Memantine and Aricept. 2 years after diagnosis they changed it to mixed dementia with a primary diagnosis of Frontal Temporal Dementia. Both of the medications they had him taking are known to make FTD worse. Sometimes I think those years of sticking my head in the sand may have been the best way to go.