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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.
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..
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.
Before you go down that road, make sure Wills, POA and trust (if needed) are established.
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.
I lie and tell her they are checking. She's happy with that answer for a few weeks and the game goes on. They can't give her any more. She's maxed out. Good luck.😘
However, a friend had her husband tested by the same doctor after being told by another he simply had Parkinson's related dementia. He was then diagnosed with Vascular dementia which finally explained many of the issues she had been dealing with.
So no, having insights to my husband's behavior and having a name for my friend did not necessarily help either of us handle things better but the insights we both gained helped greatly in accepting things the way they were.
After hearing of the experiences of two of my Parkinson's support group friends, I have signed an agreement (not a contract) to donate his brain for research upon his death. He was already an organ donor and I know this is not the same, but felt he would want to help further research. I discussed it with our two sons to be sure they had no problem and they agreed. My two friends finally got a diagnosis of the type dementia their husbands had been dealing with and at this point, that will be sufficient for me.
Here is the program in our state: https://medicine.musc.edu/departments/pathology/division-of-experimental-pathology/ccnl/how-to-become-a-donor
In both cases, they said they paid nothing. They actually saved money because the program transported the body to the research center 100 miles away and within about 24 hours transported it to the funeral home the family had chosen. They both were impressed with how professional and respectful everything was handled.
Ask your neurologist which type of cognitive impairment your loved one most likely has. Ask for information about usual progression of the disease. Ask for advice on what medications and therapy is most helpful for your loved one at their current stage of the disease.
The Delaware Hospice, Palliative Care, are working with my wife here at home, they had a nurse come over and test her. This was for medicare. We received the results about 3 weeks later. They have 3 levels of dementia low, moderate and severe.
My wife came in the moderate range.
I think to be severe you have to be in very bad condition.
Short answer is Medicare has tests for this and as I said we received ours through Palliative Care.
If you have that available in your area, try them.
My LO can still fool people, too.
I wanted a diagnosis for various reasons
https://www.nia.nih.gov/health/alzheimers-symptoms-and-diagnosis/how-biomarkers-help-diagnose-dementia