Continued follow up after diagnosis

Lgb35

DH was diagnosed with FTD Semantic variant. There is no treatment so is there still a need to be followed by a neurologist? I am unsure what the benefits would be if there is no treatment.

What have you all done?

Vitruvius

After my DW was diagnosed with Semantic Dementia we worked with a neurologist for a while. It was helpful to have someone who knew what medication might be appropriate and was willing to go through the effort of honing in on the right medication strategy. The neurologist was very kind and attentive, she was willing to talk with me by phone before and after my DW's appointments. But frankly her value was as much to help me in the early days to understand what was happening and what might be coming. The neurologist did recommend PT, OT, and speech therapy, all of which I consider to have been pointless and, good as she was, I'm not convinced every neurologist is fully versed in what would benefit the full range of dementia patients, especially those with rare dementias like SD. 

About six months before my DW went on hospice, the neurologist closed her office and moved on to other things. By that time we really didn't need a full blown neurologist but my DW's PCP was actually not up to maintaining and adjusting her medication regimen. It wasn't until my DW went on hospice that we once again had the right kind of attention to her issues. 

My DW fortunately didn't need much in the way of behavioral medications, mostly just to mitigate the affects of confusion and anxiety. Also importantly she needed meds to address "silent seizures" she was having, muscle contractions, and balance issues, and this required monitoring the meds for their affect on her behavior.  In some cases meds caused some rather negative behavior and we found other meds that worked with few or no behavior effects. 

So in a nutshell, if you have someone who is capable of going through the process of finding the right medications for your LO, that may well be enough, but this is not likely to be your average PCP. 

BPS

After diagnoses and I think 1 follow up I didn't see any value the neurologist. Her PCP was willing and able to take the time to work with us. We were lucky, I don't think a lot of them would do as good as he did. That worked until she went into MC. There the facility nurse was very hands off and the Dr that came in seamed to be more interested in how many Medicare patient she could see for billing. I was getting very frustrated and felt I had to research and make all the recommended changes to medications and care. I would tell them that I didn't have the experience or training but what about xyz and they would say "we can try that". Eventually my wife went of hospice and the hospice nurse is very good and on top of what is going on.

H1235

I asked the neurologist what the purpose and need was for follow up appointment. They said some people like to come in and discuss issues and the progression, but said there was no harm in not following up every 6 months and just seeing the pcp. I think it really all depends on the pcp. Unlike many here the neurologist was more willing to write a prescription to help with anxiety than moms pcp. Once we moved her to Al and she started seeing a doctor that visited the facility and was more aware of issues than her previous pcp we stopped follow up visits with the neurologist. I think the key is to have a good doctor (neurologist, pcp or Geriatric psych) that has some understanding of dementia, good bedside manner and is willing to prescribe the appropriate medication when needed.