Primary Care Doc or Neurologist - Recommendations please

Nancy Anne

My DH was diagnosed with early-stage dementia a year ago.  The diagnosis was made by a neurologist with an MRI.  Our visits since then have proven to be useless.  He offers medication options but our Primary Care can take care of that.  Why go to a Neurologist?  The writing is on the wall that he is getting worse.  Medications for depression and anxiety help some.

Ed1937

Nancy, my wife hasn't seen her neurologist since diagnosis in 2018. She takes no medications for dementia. Her PCP handles everything.

M1

Nancy Anne I think there are varying opinions on this, it may just be a matter of personal preference.  Our primary care doc was so good--and the options for active treatment so few--that we never did go to a neurologist.  I'm personally with you that I never saw the point, but others would disagree.  If more treatment options become available, it may change.  Some use a geriatric psychiatrist too, if delusions/agitation etc. need medication.  I think it can vary.  I think you are okay to trust your instincts.  Good luck.  It's hard, regardless.

jfkoc

What is important is that the proper protocol for diagnosis is followed. The process involves the elimination of caused causing what you are seeing. An MRI will not detect a vitamin deficiency...something easily treated.

There is a lot to read online that clearly explains the diagnosis or you can select ALZ.org at the top of this page.

Diagnosis is not easily done so please summon up all the patience you can. You will want to know what is causing the dementia because the drugs used are not universal.

Keep at it until you find the right Dr.

Rick4407

We have a PCP, concierge style, who is comfortable taking care of most things.  We had already been prescribed Seroquel by the neurologist and she can continue that.  No idea if she would have prescribed it herself.  We saw the neurologist every 6 months and now its a year between appointments.  The real winner for us with the neurologist is the NP who I can send emails to and she responds within hours with advice or a revised dosage, schedule or what ever.  Handling behavioral issues is where I see the neurologist is important.  

My DW other Dr's (dermatologist, etc) we have dropped and the PCP did not even do blood work on her last physical.   My DW is late stage 6 and soon to be early stage 7, so we are sort of in a palliative care stage.   She remain happy and cooperative which is all I can hope for. 

Knowledge and experience with behavioral drugs is where a neurologist may be of benefit.  Good luck, Rick 

Crkddy

My DW was diagnosed with EO 4+ years ago.  Her PCP did her initial screening when I raised the alarm bells, and referred us to a neurologist for further testing, which resulted in the diagnosis.  We continue to go to the neurologist once a year for routine follow-up.  For us, I think this is probably best since because the neurologist has different perspectives than the PCP.  I think you should do whatever works and are comfortable with.

Lynne D

After diagnosis a couple of years ago, my HWD just sees his PCP and a palliative care team. I value the palliative care team because the doctor is a gerontologist and knows how to deal with dementia patients. Other members of the care team are a nurse, pharmacist, social worker, and a spiritual counselor. It is an approach to treat us a a team, and I like it.

Jeff86

As my DW progressed (now late stage 6), we have dropped the neurologist from the care team and switched PCPs to one who treats AD patients as a significant part of her practice.  Those half-yearly tests (clock drawing, remember these three fruits, and so on) became exercises in absurdity as my DW no longer knew what day it is, what town we live in, and so on.

PCP manages meds, and it’s working well for us.  I should add that DW doesn’t manifest behaviors that might require a geri-psychiatrist (delusions, agitation, aggression).  

Quilting brings calm

Like many here, my mom’s  PCP would not make the diagnosis even though he would dance around it.  He wanted a specialist to make it.  My Mom refused to complete the testing at the geriatric psychologists’ office.  She only completed the first  visit, and not the major testing afterwards.  That meant the specialist didn’t even send a note back to the PCP with a possible diagnosis. It was over a year later that we got a diagnosis.  She’s seen the NP at the neurologists’ office twice now- and will again next week.  We will probably keep seeing her for a while to make sure that the medications are appropriate.   Some PCPs either can’t or won’t prescribe the medications you need for sundowning, delusions, hallucinations, etc.  So I’m keeping that NP- neurology  relationship for possible future needs.   There will come a time in the later stages, that we will probably discontinue going. 

I will try to do the same for my stepdad once he completes the testing and we get an actual diagnosis.