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.
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.
Before you go down that road, make sure Wills, POA and trust (if needed) are established.
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.
Scans sometimes show as normal but the behaviour suggests they have a dementia and sometimes vice versa.
The doctor then asked me (without her there) how she was doing. I told her that I was paying her bills and cooking and making sure she takes her pills. I told him that she had memories that didn’t match facts and she filled in facts on recent situations. I was there and knew the real story. The doctor said she was showing signs of cognitive decline and was probably getting close to moderate vascular dementia due to the brain scan. It is true the only definitive way to get a diagnosis is invasive but that can be avoided with a doctor not afraid to say the hard words. Her neurologist wasn’t that helpful but her geriatrician was helpful. The neurologist did help with the driving situation. He suggested that for the safety of her and others, he recommended a driving evaluation. This was self pay through a wonderful place that when I took my mom there, she refused to participate. They gave me the money back. :) BTW, the geriatrician was the only one that was willing to put the diagnosis/symptom in writing. That allowed us to sell mom’s home when she went to a AL. I spent a great deal of time learning how to reassure mom and learn her ways. I used my words to let her know that I love her and I am her memory…..”try it Mom, I will remember for you”. She was sad but reassured.
they seem to be more cooperative than men in general..at least from what ive witnessed..Its a curse for my dad to be going what he is going thru, And he doesn't even know why? One moment he was in his home or business sitting around with everything falling apart around him which he was quite content in doing so, and next he's in in a memory care facility trying to get out for 14 months now..and even succeeded in escaping this week..only to get rounded up and sent to the hiospital and back to the place he escaped from.. The next day he asked one of the maintenance people to call him a taxi..You are blessed to have this kind of relationship with your mom..
YOU already know what's going on with your mother. You don't need the expensive scans to confirm the doctors care or your intuition on her diagnosis. You may be a little in denial about it.
My dad lives with me and is also good about answering those five questions with his doctor, but I know he's showing definite signs of dementia (he's 91-1/2 yo). I've learned with him that it is better not to mention the word "dementia" to him because it means something terrible to him. I've also learned that all that you've mentioned about your mother, my dad will likely experience the same as his "vascular dementia" progresses.
Everyone replying on the forum obviously understands and you can find much understanding and support here, if not a solid solution because there is no "solid solution". Good luck.
BTW, we knew it was Parkinson's at first because of gait issues that caribdopa-levadopa helped. We knew it wasn't Lewy Body Disease because his motor problems preceded his cognitive problems. With LBD, it usually the other way around, but we also couldn't rule out a mixed type of dementia. Did it matter? No. Treatment was the same. In his decline did he do progressively worse on the 30 questions? Absolutely, yes.
See All Answers