What is the function of a neurologist after Alz diagnosis

Maru

I have searched for this topic and can't find anything related.

My question, more exactly, is what can a neuologist do for my DH other than prescribe varioius meds or give him experimental meds?

We have been through the non invasive meds and DH has had a reaction to each. We will not do the newer intravenious meds. So, is there a point in continuing to see the neurologist other than have him/her verify DH's progression?

Hoping this group has some info here that maybe I have overlooked.

ImMaggieMae

Maru, I think it depends on the doctor. My DH’s neurologist and his NP are very important to us. After diagnosis there doesn’t seem to be a lot anyone can do aside from medications. But medications are what hold things together for us and sometimes need to be changed or adjusted. They are open to suggestions and although we don’t see them often, maybe once every 4 or 5 months unless something specific changes, but they spend as long as needed, often 45 minutes or more, and really listen. We’re lucky if his PCP spends more than 7 minutes before rushing him out.

Russinator

Great question. I've been wondering that very same thing. Thanks for asking it for me and others.

RetaMeta55

I am very disappointed with our Neurologist. He has seen my DH 3 times. The first time for a diagnosis and prescribe, second to walk in and say “ what can I do for you” no examination. My husband expressed interest in the new IV medication. The doc gave him a name of another neurologist and for him to come back in 4 months. In the meantime my husband expressed that he changed his mind for fear of the side effects of the new IV medication. So we didn’t pursue the other specialist. Delusions and paranoia increased so each time I reached out to the original neurologist who initially put him on Seroquel as needed. When that prescription ran out and delusions and paranoia continued to worsen I tried calling to renew. My requests were ignored. On the third appointment the neurologist came in again saying “what can I do for you” by that time my DH was showing his delusions to the doc. The doc dismissed what my DH and I were saying and referred us again to this other neurologist. By that time DH had forgotten he didn’t want the IV medication. We walked away with another referral and no next appointment. I tried to call the new neurologist and left 2 messages with no call back. I wish I could find someone who is more compassionate, responsive, and a good bedside manner.

rplourde50

Unfortunately, seems they're mostly good for only medication management. This is what our neurologist has said. We see her only about once a year. HOWEVER, with the neurologist can come a host of other connections that are helpful. Ours is with the University of San Diego Shiley-Marcos Alzheimer's Research Center. They're on the cutting edge of things. We have gotten with an excellent, associated, social worker who has hooked me up with many resources for my DW and me. Including a support group, enrichment activities, and DIY materials to manage our life. So it's worth affiliating yourself with a good group.

Carl46

We get medication management from DWs PCP. Haven't seen a neurologist in a long time.

Qzie

I was able to get DW to the neurologist for an initial evaluation only because she thought we were going to a dermatologist.  She had anosognosia big-time. By that time, she had been displaying symptoms and behaviors of FTDbv for over 5 years. Neurologist confirmed this and prescribed sertraline for growing anxiety. Two subsequent appointments had to be virtual appointments, as DW was refusing to leave the house for any reason at that point. Nothing helpful came out of the appointments and last April, the neurologist broke up with us when I told him DW was bedridden and unable to do in-office visit. He tried to guilt me into hiring a medi-car and dragging her to his office. I thought (and wish I’d said), “why would I traumatize a late-stage dementia patient just so you can tell me she’s getting worse?”  On the other hand, PCP has been compassionate and supportive through this whole journey. Twice, she responded to my portal messages during off-hours, once at 1am and once on a holiday when I was worried that DW had a UTI. She took over Sertraline prescription so good riddance to neurologist. He’s not a bad guy but I think his primary focus is research, not patient-centric care. 

blacksparky

I agree with everything they has been expressed above. A Neurologist is great to get an initial diagnosis but after that I see no reason to cause my DW all that anxiety. Besides all the great support we all receive from this group, which I just love, my DW and I are on this terrible journey together on our own.

SDianeL

after the diagnosis my DH only saw the neurologist once in person. She did do virtual visits and I sent her his behaviors monthly along with his PCP. At the suggestion of this forum, I asked for a teferral to a Geriatric Psychiatrist who managed his anxiety and anti psychotic medications. The recommendation said that the Geri Psyche Docs are the best to know which medications to prescribe for anxiety, agitation, hallucinations & delusions. He only had to see her in person once. Then virtual and I also sent her his behaviors via the patient portal. She was excellent. Once I placed him in memory care, the facility’s in house physician took over all his care. As he progressed we stopped all other specialists visits. In my opinion there is no reason to see a Neurologist. The disease is progressive, there is no cure and a Neurologist can’t help unless they are the only option to get meds for behaviors.

Maru

Thank you to all of youBe bra for your comments. You validated what I suspected. My DH will be 90 in a few weeks. At the very onset of his ALZ diagnosis, he made the decision to do minimal medical intervention in all areas of his life, other than any available oral meds for the ALZ. Unfortunately, he had reactions to all of them, so, now we wait to see what will be.

Be brave out there in this difficult journey.

Dio

I've wondered the same. It's really just medication management, or prescribing, rather, to continue getting the combo of meds. IMHO, the neurologist only sees the patient for no more than 30min. This snippet of time is not enough to see the whole picture, especially if patient showtimes big-time. It's not the same as 24/7 caregiving and being on the brunt end of anger and abuse. The medication that was added which helped make a 180 turnaround for my DH was recommended by the MCF director. If not for his insistence due to the violent behavior and danger DH posed to staff and residents, the neurologist would have never prescribed this med. He has no experience prescribing this med for LBD aggression/violence. Now because DH is so "normal," the neurologists thinks DH doesn't have dementia…good grief!! It's like a diabetic patient taking meds with test results now looking good, the doctor says patient no longer is diabetic. How does that make sense? Neurologists who claim to be dementia experts ought to spend some time in MCFs to get a better depth and breadth of the real world.

FTDCaregiver1

in the beginning, I opted, and got lucky, to have a real good neurologist, to eventually get a diagnosis. As time progressed, opted for regular income zoom meetings, with a GeriPsych, focusing on medications to combat behavioral symptoms such as agitation, (loud outbursts, hyperkenetic behavior). On the side watched a lot of YouTube videos, e.g. Teepa Snow, leaning how to be a better caregiver and techniques to address agitation such as redirection and coescalation.

????

We really like my wife's Neurologist. We see him about every four months. As others have mentioned he manages her meds. He is a good listener and has referred us to other resources. Last time we saw him he told my wife that it was his job to help her through this journey. I could not image not going through this without him.

Sitemsek

I'm really surprised to hear others say "all they do is medication management" like that's nothing. That's a huge benefit to most patients including my wife. Maybe we're just luck but my wife love's her PCP and her neurologist. When her neurologist retired last fall she was one of the few patients he agreed to keep seeing. We see him every 3-6 months and leave feeling like he cares and that WE are in good hands. Thank God!

Marchbanks

We saw the neurologist twice for the MOCA memory test. The first time was just the actual test that produced a score of 19 out of 30. The second visit he asked DH about current events. I felt I couldn’t have an open conversation with him and I needed to show him some videos and audio of my husband’s behavior so I scheduled a private meeting. He would only diagnose dementia and told me after viewing the videos that he thought he had about a year or two left and there was no point in seeing him again. No empathy, no suggestions for help for me, not even a brochure on where to find resources. I’ve had to learn everything on my own about dementia.

Luckily I found a geriatric psychiatrist NP through a friend who has been managing his meds. She was pretty perplexed by his odd behavior and she believes he has bvFTD. So do I. At least she listens to me.

I was glad to be done with the neurologist.

JoseyWales

In my experience, the neurologist was a waste of time. I was told to keep up visits with the neurologist so he/she could help with meds when/if the time came for management of behavioral issues. Once that time came, DH's neurologist said he couldn't help. I needed immediate help, and didn't get it.

Quilting brings calm

I took mom to the NP in neurology every six months for 2.5-3 years. The NP really didn’t do much - prescribed Donepezil. She watched mom walk and gave her the 10 minute MMSE test each visit. She would not change mom’s diagnosis from mild cognitive impairment to dementia because Mom scored too high on the test. Even though I knew better. She did nothing helpful. I finally asked her PCP if he would take over the medications and we quit seeing the NP. We also quit seeing the psychiatric residents at the clinic because 1) they only prescribed medications and would not prescribe Seroquel, and 2) the constant rotation of them meant no continuity of care. The PCP took over those medications too: sertraline and mirtrazipine.

After a while, all the various doctor visits did nothing but upset mom and add to my stress level.

GothicGremlin

I'm mixed on the neurologist front. My sister saw a fairly good one at the beginning. He had a lot of contacts, which were helpful, all through her illness. He spent a lot of time with my sister, myself, and my cousin (with my sister's permission). So I felt like at the beginning when I needed a lot of guidance, he was there.

Then we didn't see a neurologist for about three years, and it was fine. Then, when Peggy was having difficulties walking, moving around, etc., another visit was scheduled with a different neurologist. He was okay, nothing special, but he provided a good reality check for me. I mean, I had no illusions about Peggy's condition, but it's one thing to know it, and another thing to actually see it. Like - when the neurologist held up a pen and asked Peggy what it was. She had no idea. Or when he asked her to lift up her left leg. Again, she had no idea what "lift up" meant.

It was that visit that sent me back to Peggy's GeriPsych doctor not only to tweak meds, but also to get her occupational and physical therapists (for a couple of months), and an RN for a couple of visits. It was all helpful to her. And it was good for the caregivers at Peggy's memory care because FTD is a slightly different beast than Alzheimer's and they were given Peggy-specific training on that.

So yeah, the second neurologist didn't do all that much, but he got the ball rolling so that others could step in and help with my sister.

Sandi Roe

hmmm, I was wondering the same thing. Ours told us we could do a trial but it probably won’t help but maybe it would help someone down the line. We declined the infusion, my DO is 86, and have no more appointments, 🤷‍♀️Our PCG will handle it from now on!

JC5

wondering the same thing. DH sees neurologist every 4 months. Same questions nothing new 10 minutes later see you in 4 months! Why bother?

Lgb35

we were driving over 4 hours to a highly reputable clinic for testing and to find a diagnosis. They diagnosed 3 years ago with MCI and aphasia but now want us to see an assistant which we did not care for. DH is 61 so I feel like I will need a diagnosis beyond MCI when applying for Social Security disability

BPS

The neurologist my wife went to in 2016 did test in his office. I don't remember how long they took but it was quite a while I think two times and he diagnosed her with early onset Alzheimer. Once we had the diagnoses and he prescribed Donepezil we didn't go back but she has had a good PCP that has been able to change her medications as needed. I don't think all PCP's want to take the time to work with their patients.

H1235

I found the neurologist was more familiar with dementia than moms pcp. The neurologist also made recommendations to not drive, not live alone and finally suggested that she should not be left along at all. Mom tended to listen to the neurologist. The pcp was hesitant to prescribe medication for anger and useless in helping us deal with things. She now has a better pcp through AL and she doesn’t see the neurologist. I think I all depends on your pcp.

Constant

On the recommendation of my DH's PCP we began to see a neurologist. In the beginning, she would see my DH for 10 to 15 minutes, but over time he was only seen by a PA. Eventually, it became clear there was no benefit to continuing to go to the neurologist. I asked his PCP if he could take over prescribing medications and at any point that he felt we should return to the neurologist we would do that. I agree with the comment that the neurologist really only had an interest in research studies and my DH did not fit the requirements for any of the studies she sent him to for evaluation to see if he would be a study candidate. The last time we went to the neurologist I asked to see the doctor and had to wait over an hour - the excuse I was given was that was what it took to see the doctor. Not going back there as they were not helpful.

Maru

https://alzconnected.org/discussion/comment/236577#Comment_236577

https://alzconnected.org/discussion/comment/236577#Comment_236577

Thank you to everyone who responded. Our experiece with the Neuro was similar to Constant…there are more things that could by tried if we were willing to drive to Dallas for treatment…i.e. experimental treatme