What is the point of seeing a neuropsychologist?
I have commented about this before, but have never asked that question. My 92 year old husband, dx'd in 2019 with mixed dementia, was referred to a neuropsychologist at Yale by the neurologist he saw initially. Ten minutes into the interview, my husband terminated it saying it was insulting to his intelligence and he would not continue. The neuropsychologist tried to get him back in track, but no dice, so we went home. He later called to offer any help we needed and I asked him whether the purpose exam was to help my husband or to advance research. He didn't give me a satisfactory answer about it being a help to my husband, so I wasn't regretful about the termination of the interview. Honestly, the best help we've had is from his geriatrician and especially the APRN in the practice whose mother has Alzheimer's so she knows what she's talking about. And these groups, online and in person. For a condition that can really only be managed, I cannot fathom how a 2 hour interview with someone who has never met the patient, not lived with them 24 hours a day for years, can help. His original neurologist suggested going to the senior center for socialization. My husband's primary care doctor (for 20 years) would have known that he wouldn't have done that BEFORE he developed Alzheimer's, so taking him into a situation like that would only be stressful, it seems to me. Am I being defensive? I don't think so. I do not regret for one minute the way I'm shepherding my husband along this journey, paying attention to where he "is" on any day, hour or minute and adjusting appropriately. I guess it bothers me that caretakers may be being given false hope - that a neuropsych exam will somehow change the trajectory of the disease. Interested in hearing rebuttals to my assessment of the exam. I'm open-minded!
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The neurologist never said if it was Alzheimer or something else. He is 94 so I refer to his condition as dementia.
I've been caring for my Mom for 4 years. THe neurologist was only helpful for the diagnosis. The tried memantine to slow down memory loss but too many side-effects. The neuro doesn't treat an untreatable disease, why go? Yet, I still took Mom until a few months ago when she started having seizures. They could do no more and suggested palliative care which she is now on. The entire 2 or 3 years of seeing neuro - seems like a waste. Every 6 months just to document she was getting worse. They give no help in dealing with it for family or patient. I'm frustrated and don't see the point after initial visit.
We have two neuropsychologists, a geriatrician and my husbands PCP. We have never seen a neurologist. However I would like to add one to our team.
We had gone through the same. The only thing that was positive was having mri’s of the head to make sure there wasn’t another reason for his dementia. He was prescribed menmentin &donepesil(sp?). 11yrs ago. I guess it slowed the progression of his dementia. Our family Dr now prescribes them.
We finally did get a general diagnosis of dementia from our new doctor. It is virtually impossible to find a neuropsychologist or neurologist for any condition in our area.
Our doc is referring us for palliative care. On the same day, we finally heard back from the home care service, and have someone coming to help with respite care. Small steps.
I did find several scholarly studies that all found that over half of all primary physicians and over one third of specialists will not diagnosis dementia. The National Institute of Health analyzed these studies and supports the findings. Insurance doesn't cover the long conversations needed to confirm behaviors.
In our state, private diagnoses are not accepted prior to admission to memory care. It is based on need and a recommendation. The facility must perform evaluation and make a diagnosis in 30 days.
Sadly, it all seems to come down to money.
I totally agree with your assessment about the medical & nursing home industries. Let's face it, both industries are out to make money and our loved ones are the source of those monies.
I only see what a wise person you are! I quite agree with you on all points.The medical field in your husband case can only give you hope that they are going to find a cure which is somewhere but not found yet!
In my case, I am hoping to manage my own cognitive impairment / dementia progression. I have a dear friend who is also a hospice nurse and I have legally designated her to be my healthcare power of attorney.
When it is time to park me somewhere, her job is to find the nursing home with the worst pneumonia occurrence rate in the state and put me there with treatment restrictions she will communicate ad hoc that only allow me to be treated for pain and anxiety - but specifically not to resolve any disease or condition which might extend my life. So for instance, no antibiotics. And I will have a DNR.
In short, If God sends me an ability to exit somewhat gracefully, I want to have no obstacles placed there by well intentioned facility staff or physicians.
But thats me. I just want to relieve my children of that burden. They all understand my intention and support it.
Short of moving to a country with compassionate end of life options, this is the best I can manage.
the neurologist can prescribe seizure medication. But understand it is never easy to know which med is the right one. The neuro gave my brother a med that made his seizures worse. We tried another and that one was better, so it is hit and miss until you get the right one....
In 2019, I noticed lapses in my LO's memory and had him evaluated by a psychiatrist. His results showed memory loss, and I began looking for a neurologist. We live in a somewhat rural area. I figured if I had to travel on snowy roads in the Idaho winters, I might as well get the best doctors in this area of the country. I took my LO to the University of Utah, where he has gotten a diagnosis of Lewy Body Dementia. That was 5 years ago. Our team consists of a neurologist, a geriatrician, a neuropsychiatric nurse, 2 outstanding technicians, and a social worker. I can't imagine life without any one of these amazing professionals. Each one has made my husband's life, my life, and my family's life far more manageable than I ever thought possible. I have done lots of advocating for my husband, and it has made my life easier. If your neurologist isn't helping you and your LO, it's time to go searching for another one. Remember You are the doctor's EMPLOYER! Good healthcare is not always nearby. With a few in-person visits, good healthcare can be assisted by virtual visits.