I have seen my father lose his sharpness over the years *he is 90*and lives in AL. He could whip through a Sudoku in no time. He could do complex math in his head. He wrote stories *22 of them* and they were very good. He broke a hip in 2020, and again in 2022 - in ‘22 the rehab Dr. called to say they were placing him on *Fill in the blank Rx for dementia* - I said, He doesn’t have dementia, hasn’t been diagnosed with it anyway. The Rehab doc said, Take it from me, he has it and it is probably mid-stage. I refused the meds after talking with a nurse friend who said the med the doc wanted to prescribe was used to manage residents and make them ‘compliant’ it was not for dementia, it was a tool to keep them quiet and pliable. So, I said no. Years later of course I see symptoms, and looking back recall many incidents. Which is why he is in AL because he suddenly had ‘risky’ behaviors, and acting like a 20 yr old. Plus he broke his leg and is permanently in a wheelchair. So, all this to say, what is the benefit of going to the Neuro for a definite diagnosis? He is not ‘out of control’ or hard to manage. He minds his own business. Any meds prescribed to ‘lessen’ symptoms, or to prolong current state would not be taken by him. He is ready to go now and does not want ANYTHING to prolong it by one day. So, does it really matter what stage - what level - vascular - FTL - LBS? What is the benefit to that information? He has had MRI’s from several fall, and the radiologist reports show shrinkage, etc. If you can’t make it normal again, and he doesn’t want to prolong his life by any devices/meds etc., why bother? Help me understand. Thank you all.
Each case is individual, but your Dad has progressed to this stage without a clean and definitive diagnosis. As you already know, there's no pill for this. But there are a lot of expensive pills that don't do anything by research so far. Dad is already in care.
Much of getting a diagnosis is because it is needed. Needed to get guardianship. Needed to force someone into care. Needed to access this or that.
You have no NEED and you already had a doc tell you "Yup. Has it and it's already mid stage". So you already know and accept.
There's really no point in having the WORDS and stages that I can see, and I am a retired RN.
I don't know. Perhaps someone here will have a good reason to do that.
I don't.
To me, the multiple MRI’s - over 4 years - tell the story. Thank you AlvaDeer, always with the wisdom!
Seems to be Dad has had the tests. The Doctor has not given his Dementia a name like Vascular, Frontal Lobe? My Mom was never given a name either. Her Neurologist was not into meds if they weren't needed. My Mom was easy to care for. She did not need anything until the end.
If you have to take control of legal, financial, health matters a medical diagnosis is important.
In the very early stages medication can sometimes help slow the progression. It can never be reversed though.
In the early stages a person may qualify for medical studies that may eventually help. I may be in the minority but given the prognosis I think being involved in clinical trials is important.
But as far as I am concerned after the initial diagnosis I do not see the need to continue to return to a neurologist that is just going to order testing that is uncomfortable for the person with dementia and reorder meds that a PCP can prescribe. (That does not even take into consideration the higher co-pay for a "specialist" that most have to pay)
My dad has had his ducks in a row for ages and ages - he thought he would go first due to a bad heart. But, instead mom had a stroke, developed vascular dementia, and thankfully she passed a peacefully a few years later. I am the MPOA - DPOA - Guardian.
After her husband died, I took her to a neurologist, they tested her said she had dementia (surprise, surprise) and there was nothing they could do, bring her back in 6 months....Hmmm no.
It was a total waste of time and money, she lived another 3 years in MC and passed in May 2024. She was a very passive person and that attitude continued until her death.
I wanted to add that medicine to make him more compliant and dampen dementia behavioral symptoms (most likely SSRIs or antipsychotics) would in no way extend his life by any amount.
But it sounds like none of this is an issue in your dad’s case. I wonder why the Dr is suggesting it.
Best of luck to you.
Usually dementia is diagnosed by first discounting any other medical cause for the symptoms. Things like a UTI, dehydration, post-op hospital delirium, diabetes, vitamin deficiency, stroke, tumor, etc. Then when one is cleared of those possible causes, written & memory testing, and then imaging helps to confirm it.
But in your Dad's case he most likely had a pre-op physical so maybe some of those issues would have been caught. Also, his advanced age and the fact that the symptoms seem to have existed for quite a while seem to point to age-related decline.
There are prescription medications like Aricept that slows down the progress for a short time, if taken early enough. But there is no cure for dementia. I don't think there's any benefit for further diagnosing for your Dad since nothing can be done about it.
May you receive peace in your heart on this journey.