Neurologist vs psychologist and others

LaneyG

Im interested in your experiences dealing with neurologist vs psychiatrists or both for dementia. I’m am not at all impressed with husbands neurologist. She hasn’t done a thing for him in a few years outside of occasional follow up visits that basically accomplish nothing. However his psychiatrist has been much more helpful to us dealing with depression, anxiety, anger, agitation. He has been more “available”. His neurologist prescribed him galantamine and memantine. His psychiatrist is managing antidepressant, panic and anger meds. It is somewhat cumbersome juggling both providers and heaven forbid they talk to each other. Do we need the neurologist??? Thx!

charley0419

Waiting for responses as very good questions

harshedbuzz

@LaneyG

IME, aside from my mom, no member of dad's team was more helpful than his geriatric psychiatrist. Full stop.

Dad needed a comprehensive evaluation to figure out what was going on. He was diagnosed at a major university medical center's memory clinic. His neurologists nailed down his dual diagnoses but had little to offer beyond an inconvenient appointment which brought nothing to the party. Once we had the geri psych on board, we agreed to discontinue the yearly check in at the memory center.

Dad's geripsych was warm and engaging. Dad, who spent a lifetime ridiculing those who attend to their mental health, looked forward to the appointments because he felt heard and respected in a way that didn't happen elsewhere. The geripsych prescribed a cocktail of medications that dialed back dad's anxiety and aggression without sedating him. One of dad's dementias was alcohol-related; the neurologist offered no help around this and TBH it was clear he held us responsible to dad's drinking and judged us for it. The neurologist trialed a medication that sometimes works to reduce cravings for things like food and alcohol which helped a lot. He was very responsive to mom and me when contacted via email about issues we didn't want to explore with dad in the room. I once sent him a video of one of dad's outbursts and had a medication adjustment within the hour.

YMMV, but I'm Team Geri Psych 100%.

HB

M1

Until there are more effective medications for dementia the neurologists really don't have much to offer after initial diagnosis (and even then it's limited, as many here can attest). The psychiatrists are a better bet IMO and more helpful with behavioral issues.

Cecil Jones

My wife's neurologist was NO help. She sees only our GP. Dementia takes all forms and some love ones may need more than a GP. If my wife needed more, I'd take her to a Geriatric Psychiatrist and skip the neurologist.

WIGO23

My husband’s first neurologist was cold and indifferent. He gave the wrong diagnosis of Normal Pressure Hydrocephaly. The second neurologist asked us to leave his office because I asked if he and I could speak not in front of my husband. I wanted to let him know what I observed contrary to my husband’s downplaying. The neurologist abruptly said, “Don’t tell me how to practice.” Both local neurologists were nightmare experiences.

We ended up flying from Florida to Boston Massachusetts General Memory Clinic. The neurologist was kind, thorough, ordered a lumbar puncture, reviewed his MRI, neuro psychology exam—all the appropriate tests. My husband is in good hands. He has seen my husband in person twice in a year, Each visit has been as positive as the first. He prescribed Aricept but was honest about its limits. He has seen my husband twice via tele-medicine and conducted tests to help determine progression He speaks with me privately about our daily lives and what I observe.. We have talked with him about the newest treatments and risks. He is honest that other than monitoring by re-testing with a few tests, trying Aricept or Namenda, we are in a wait and see phase. He tells us the new infusion drug treatment has had a very slow start-up even at a major Memory Clinic like Boston Mass.

My opinion is based on our experience but even if you live in a large city like we do, a caring and competent neurologist is hard to find. I have more faith in dedicated Memory Clinics that are nationally acclaimed. We are lucky to have the financial resources to travel for care. We have no experience with psychiatrists.

mrahope

I have never had experience with a psychiatrist for my DH. My DH was a clinical psychologist and I can imagine the protests I'd hear if I tried to bring him to a psychiatrist. If it was up to me, I'd surely at least try it.

My latest experience with a neurologist has been pretty negative. After a move to a new area, it took us 3 months to even get an appointment with a neuro, and even then only because of a "cancellation". Not to mention that the office was almost an hour away. When we got there, I felt that they didn't address the dementia issue at all. To be fair, DH has a severe sleep disorder which co-exists with his memory issues. He's been prescribed oxycontin for this and the whole appointment dealt with switching him to another med and transitioning. When I kept asking about his memory and safety, they really didn't seem to have anything to offer. They've referred us to a geriatric center, but even at that, it will be 3.5 months until he can be seen. I'm pretty fed up with the neurologists. They seem, at least IME, more focused on fixing what they can fix and otherwise letting the chips fall where they may.

If I had a reasonable choice, I'd see other professionals.

Caro_Lynne

My experience is the same as most as far as the neurologist; he brought nothing to the table.

After reading many posts on this forum about geri psychiatrist, not psychologist as they cannot prescribe medication, I looked into it and found one that specializes in dementia. He has been my go to doctor. We see him once a month to assess how the meds are working and tweek as needed.

He sees his PCP every three months for everything else.

Mimi50

https://alzconnected.org/discussion/comment/193329#Comment_193329

My husband was diagnosed A year ago. He has VD he is in the early stages. The doctor was good at first. But now not following up the way I would like. He doesn’t have much of care team yet.

dayn2nite2

A neurologist has nothing to offer that will stop the progression of the disease. What are you hoping for from that specialist?

The drugs he's on may help for a few months, but I am of the opinion they did nothing useful for my LO and in hindsight wouldn't have even given them.

The psychiatrist will be most useful for daily needs. Unless dementia is cured with an injection or a pill sometime soon, neurologists will have nothing of use to offer.

Mimi50

https://alzconnected.org/discussion/comment/193342#Comment_193342

My husband has just his PCP. No referrals to any specialists. The psychiatrist probably would help him. He definitely is more withdrawn.

jfkoc

Our journey went;

neurologist for initial examination>psychologist for testing, PCP for blood labs >neurologist specializing in Parkinsons> referral to psychiatrist for meds and then finally referral to a neurologist for Lewy Body Dementia/Parkinson's.

Drs are very specialized so in the end you sort of have a team.

549jb

WOW....I am absolutely stunned at the comments I've read. I have had the exact experience with the neurologist route. Suggested to his PCP yesterday the possibility of looking into a geri psych. and the response was something like" lets just see what happens". I've been waiting almost 3 years! Had to take him to the Cleveland Clinic in FL almost 3 years ago to get someone to even listen to what he was experiencing. Fought with his PCP back in home state to get the CT and MRI test done because they were "out of state"....another 3 months before he had the scans and another 3 months to see neurologist who confirmed MCI/ALZ and said really there is nothing we can do. REALLY?? We were devastated. Fast forward to today. He just had a hallucination which was very scary and we are going for more blood work Friday. It's a complicated mess but I'll never give up. New neurologist on Jan 23 and I'm going to keep pushing for the geri psych. or just find one on my own. "Standard of Care" is way below standard.

Sorry for the rant but I've been triggered.

Thanks for all of you. I am so happy to have found this wonderful, respectful place to share my story.

wizmo

Not all neurologists have experience or expertise with Alz or dementia. We started with one on referral from GP/PCP and got a fairly thorough set of tests and clear diagnosis, including referral to 2nd opinion from more expert neurologist at Mayo clinic. Neither offered much in treatment beyond donepezil/aricept. 1st neurologist handed me a copy of 36 Hour Day almost without comment; 2nd said try to make the most of the time you have left - both useful but cold. We looked at alternative treatments for a while and then found a neurologist at a clinic that does primarily Alz. They have geri-psych on staff who we haven’t seen directly but consults with neurologist + NP, and the combined team has made me feel more comfortable handling changes, adding mood altering meds along the way. Getting the right care team can be a huge challenge but worth seeking if you’re not getting good service from wherever you started.

Kibbee

Some insurance plans require a referral from the PCP to see a specialist / Geri Psych. If your plan is one that does not require a referral, it might be worthwhile to end the wait for the PCP to make a move, find a Geri Pysch on your own, and schedule an appointment. Nowadays group practices and large health care systems have online Find A Doc search functions that make it relatively easy to see what doctors are available in any given geography.

ImMaggieMae

it was a hospital psychiatrist in the ER that put my DH on an antipsychotic that has helped the most. When we finally were able to get into a neurologist at a major university medical center's memory clinic, he ordered a lot of scans, MRI, PET scan and additional tests. None of those tests were really definitive. He was diagnosed with Alz/FTD. The FTD part was due to extreme agitation, without any aggression or anger. They couldn’t really see much on any of the scans. Since the Risperidone he had been prescribed by the psychiatrist was already working well, the neurologist continued with that. He increased the Memantine from 10mg per day to 20.

Appointments are every 4 months or so and almost always with the neurologist’s very able NP. They are generally 1 to 2 hours. In the past year they have been mainly video since my DH gets upset in the car and it’s a long drive. The NP is available through their web portal for questions. Those have mainly been to discuss medications for sundowning which started about 8 or 9 months ago. They are very open to discussion. My husband is in stage 6 edging into 7. He is still empathetic, something that had disappeared in the middle stages before medications other than Aricept which was discontinued back then. He still smiles and reaches for my hand when I’m sitting next to him. He is comfortable with his caregiver who is here 12 hours per week to give me time for grocery shopping, paying bills, arguing with insurance, etc. He has to be watched 24/7 and is a falling risk. But the antipsychotic has been working well for him with an increase about a year and a half ago. We see his PCP infrequently, usually for things like UTI’s. He is not very helpful.

Cflong

> @Kibbee said:
> Some insurance plans require a referral from the PCP to see a specialist / Geri Psych. If your plan is one that does not require a referral, it might be worthwhile to end the wait for the PCP to make a move, find a Geri Pysch on your own, and schedule an appointment. Nowadays group practices and large health care systems have online Find A Doc search functions that make it relatively easy to see what doctors are available in any given geography.

Cflong

Are there any in the pgh area?

M1

Neurology evolved as a specialty in the era before there was detailed brain imaging and attracted people who became experts at diagnosis based on physical examination. The development of CT then MRI and PET scanning over the last 30 years has really changed the game in that regard. And there have been major therapeutic advances in some diseases like epilepsy and multiple sclerosis, but not dementia. The neurologists really have very little to offer IMHO. Hate to be a pessimist, but i would bet it's at least another 50 years before there are further developments that really make a therapeutic difference.

upstateAnn

I agree about the neurologist. No cure. What can they do? However, my husband’s weekly therapy session is so good for him. However, it is not cheap. $150 an hour. I realize many people cannot afford that. Still, we never go out to eat. We do not take vacations. My husband does not drink, and I very little. It is so good for him.