MD hesitant to prescribe meds for dementia

Jan, my husband has had a lot of scans, MRI’s and a PET scan, but although they ruled some things out, I think a lot of the diagnosis is uncertain. Alz and bvFTD were the two, but as time goes on, his symptoms don’t seem to go with what I’ve read about FTD. There was loss of empathy in the beginning, but that has reversed. He has never been aggressive or unkind, but rather agitated and at times hyperactive when things are going badly. I’m not sure neurologists always know, even though they’ve spent hours with him. They do seem to have figured out how to treat him, at least for now.

It’s all so confusing. Others can have the same diagnosis and have such different symptoms. That’s why a forum like this is so helpful.

When my wife was diagnosed with VD, the doc asked her if he wanted some memory meds. She, an RN, refused them. Probably 5 or 6 other times doctors wanted to give her the same. She always refused them.
I think most people will tell you that they don't really know if they help or not, but if they're not hurting anything, why not take them. Some people will tell you they didn't help, but it's rare for anyone to say without a doubt that they help. I always backed my wife's wishes.

Thank you all for sharing all the information about various drugs as this disease increases. He will not let me go to doctor with him, afraid of what i will say, if i push it, he will find a way, later, to create an issue, when least expected sometimes in public. However, i can e-mail her with my thoughts. Every little bit of knowledge helps, as y'all know.

We have to go along with them because they are an adult and doesn't doctor have to go along, as well? My husband is in some denial and if anyone tries to push it he always denies it is that bad. And it's somewhat true as it progresses, though, and others bring up doing this or that, as though he is a child, we know that just is advice from people watching without knowledge, i have seen it, when younger, but living with it is entirely different. Stay well and don't dwell, my little logo.

Thank you for the question, people share, and maybe we can't follow but gives us some idea of question we can ask, too.

I first started going with my husband to neuro dr appt. He was very upset. When they called his name I just walked along with him. It was the only way I knew what was going on. After a few times he knew I would be coming in with him. It is so hard. I feel for you. Many ups and downs. I messaged the dr. Many times. I also called and he would return my calls to talk about the decline and what needed to be done. I Bless him for his concern and help.
I wish you well.

When my husband was first diagnosed, he was asked to sign a permission paper allowing me to be informed of his medical information. He signed it willingly, although I’m not sure if he knew what he was signing. Knowing him, he was probably relieved to have me deal with it since it was easier for him. He has a new pcp doctor now and he also doesn’t believe in most meds for dementia. I had already taken him off of Arisept, which he’d taken for 5 years. It gave him a terrible runny nose. This doctor thought he should also be taken off of of memantine. I did stop the memantine and he became sad and irritable most of the day, instead of just when sundowning. I put him back on it. His neurologist prescribed it, so there’s no problem getting it. He’s back to being ok for most of the day. I’ve been giving him CBD with THC for sundowning. It does help.

Cmael, did the neurologist prescribe the THC and CBD or ok it? A lot of people have good results for their loved ones using it. But most doctors won’t even discuss it.

I have told his neurologist that I’ve been giving it to him. It’s legal in MN-5mgs. She’s fine with it. She said our goal is to keep him happy.