We just came back from a visit to my 95-year-old mother's neurologist. She has been seeing this doctor once a year for the past five years because the doctor put her on a memory pill, but we had yet to get a diagnosis on whether mother has dementia or if her issues are just from old age. Today we asked her for a diagnosis, and she said it is very hard to give a diagnosis. She said the only way was for us to pay $6000 for a pet scan or for Mother to a spinal tap to check for Altheimer's, neither of which are covered by insurance. Mother is now having some rare issues with agitation that disrupts the other people at her assisted living, and the doctor reluctantly gave the AL a prescription for her to take when she has an episode but scared us greatly about how it could slow her respirations down. When I asked what we should do otherwise if she has an episode without the medication, but she never answered that. Is a pet scan or spinal tap the only way to diagnosis dementia? Am I being silly about wanting a diagnosis? I never know whether to put it on the questionnaires that her other doctors have us fill out on her visits to them. She is fairly good at answering the five questions (and they are exactly the same questions each time) that test for cognition.
I think you need a different neurologist. But if I were you I would set up an appointment with your Mom's primary doctor for her annual (free) Medicare wellness exam. Through your Mom's medical portal, request she be assessed through a MoCA or SLUMs test. Tell them the symptoms and the concerns you have (and that the neurologist seems to be unhelpful). IMO your Mom doesn't need to have her dementia pinpointed since her very advanced age would not make her a candidate for any treatment action.
If she really somehow doesn't have a diagnosis, then I have to ask why does that matter now? Are you her PoA and you need a diagnosis to activate your authority? Other than this I don't know why you would put her through further advanced testing.
Because I am shocked that no scans and other testing is covered if your mother is on Medicare.
She should go for another opinion.
Many dementia's have to be IN EARLY STAGES guessed at for type. Others will show on scans as vessel disease or mini infarcts. My brother's early Lewy's was diagnosed as "probable early Lewy's Dementia by symptoms" and it was symptoms that were the only thing that showed. Later, in later stages it is easier to decide from scans, MRI and etc what type of dementia is involved. My brother had hallucinations and such typical of Lewy's.
This is a long time with "memory problems". I do not know what the MoCa (Montreal test) score is or the SLUMS test, but you can administer these yourself to your mom after watching on Youtube how it is done.
Basically in the end you do not need to know that your mother has a specific type of dementia. What you need to know is whether, in the opinion of her own doctor and a neuro-psyc, what is safe for her in terms of executive funcitons, being alone on her own and doing any documents. So the question is, what are my mother's deficits, are they progressing, and is she safe in self care or now requiring 24/7 help.
I hope you will get better answers. Sadly the definitive diagnosis comes after death with autopsy, if at that time anyone really truly cares/needs to know. Some dementias do tend to recur in families, and some do not. So it is good to know all you can.