How important are neurologists/MRIs, etc?

Suzzin

We live in a small town, a long way away from any gerontologists or specialized medical centers. I've been going with my parents to their doctor appointments for the last few years to "take notes". Both my parents have cognitive problems (AD and brain injury/surgery). The neurologist first told my mom that she was fine (even after I wrote him a note outlining her problems) and then after the MRI said she's so far gone there's no point to Aricept. And then a year later said she should go on it because maybe it would help. 

My dad's primary told him he was fine, after a fall, and then he had AD, which he didn't, he had a brain bleed from the fall.  The neurologist also put him on Aricept because "most people his age have Alzheimers" and then after the brain surgery when I asked if dad would get better said "I don't know, probably not". 

So. I have a healthy skepticism of this whole area. My parents hate to go to these appointments, hate to be tested and hate to be confronted with their losses and deficits. If there's no medication, no cure, no surgery (we wouldn't put them through surgery), is there any real benefit to putting them through this? They both know they are having problems, they don't need the kick in the teeth of having it proved to them if there's nothing that can be done. 

M1

Hi suzzin, I think opinions differ on this. I tend to share your skepticism, but not everyone would. Your parents have obviously had brain imaging, so that puts a lot of things to rest; if you trust their pcp, that makes it easier. My partner has also had brain imaging for other reasons, failed short trials of aricept and namenda because of side effects, so she's never been to a neurologist. She sees a very good internist, a rheumatologist, and an oncologist-that's more than enough. We're probably dropping the oncologist soon, if her lymphoma recurs now we wouldn't treat it.

I would trust your instincts on this, but as I say everyone has a different comfort level.

Quilting brings calm

I think that medical professionals waffle back and forth from visit to visit sometimes. To me, it means they are undecided and it is sort of a flip of a coin or a ‘six of one  half dozen of another’ decision. 

You will find that some people here think PCPs are good enough, others think a neurologist should make the diagnosis and medication decisions, and others tell you it’s got to be a geriatric psychiatrist.  Mayo Clinic's’ website says either a neurologist or a geriatric psychiatrist can diagnose. After that it’s really a question of whether the PCP can prescribe the right medications to control their behaviors.

I took my Mom to a neurosciences unit this week  because her behaviors warranted a specialist making a firm diagnosis ( rather than our guesses) and possibly adjusting medication.  We will stay attached to the NP there through  further testing,  then see if the NP wants to see her once a year or just work through her PCP.  

If your parents  start having behavioral issues, you may need to return to your neurologist to get medication to control them. In my Moms case, her PCP changed her antidepressant a week before our neurosciences visit. The NP was okay with the change and we will revisit when we return in November. 

 

LisaLH

I quit taking my father to his neurologist right before Covid hit.  My father is on 2 alz meds and the facility doctor where he is at refills the prescriptions.  His neurologist, to me, was a waste after the initial testing and diagnosis.  Just my opinion.

Michael Ellenbogen

The reason to do it is to see if something else is causing it. And if not try ALZ meds that may help if they can tolerate them.

Iris L.

The doctors they have don't sound acceptable.  They do need some medical attention, preferably a competent primary care doctor.  The medications may help in functioning but ultimately do not change the course of the disease.  IMO, your main approach now would be safety and providing support for daily activities.

Iris

jfkoc

The diagnosis of Alzheimer's is through a process of elimination of other causes some of which are treatable.

Google Alzheimer's diagnosis to read about the proper protocol. You need to find a Dr for your parents who will follow the protocol.

Rick4407

Hello Suzzin,  My experience and feeling is that a neurologist is essential at the beginning to make the diagnosis.  After that all the meds one gets are to treat symptoms.  My DW saw her Neurologist twice over her first year after that its always been a NP that works for him.  She's been doing this, NP for dementia, for a decade or two and seems to be knowledgeable about which meds will help difficult behaviors.   

We seldom visit, partly due to Covid, but zoom calls seems to work just fine.  I also e-mail the NP when there are problems.   The phone calls are a little social and a question or two for DW and that's about it.  Recommendations and meds are communicated to me through a separate phone call or emails. Rick