Advice on next steps please

Dmarcotte

Hello All,

I am looking for some advice from the experts here.

My DH (62) does not have a diagnosis yet, but I suspect bvFTD (that is the behavioral variant of FTD. He has some memory issues, but his behavior changed dramatically in a very short period of time and I see him struggling with his executive functioning and impulse control.

We have just completed all of our estate documents, including a durable power of attorney so those ducks are in a row. I wanted to get that done first as I know he will fight me on the medical appointments we will need to get the diagnosis. He doesn't think anything is wrong with him.

I feel like I may only get 1 shot at getting him to see a neurologist and part of me is concerned that I am wrong about him - he still has many good days as long as work isn't stressful and he doesn't need to do much at home.

He will see his doctor in the fall for a regular checkup and I am considering asking for a referral to a neurologist at that time. However, I am wondering if I should ask the doctor to do some other tests first to rule things out? I don't know what to ask for though so any advice would be appreciated.

Thanks for your help.

Timmyd

I would recommend having your notes in writing for the appointment so you make sure you cover all the relevant topics with the doctor. If there is an online portal you can also send a copy of your questions and notes to the doctor in advance. The doctor may not see much of the concerning behavior during the visit so it is important that you communicate what you have seen, how frequently you see it, and why it concerns you.

In my experience, if you doctor is competent and DH is reasonably cooperative, your PCP should know what tests to administer. At a minimum, I would expect an in office cognitive test and an order blood work. You might also get a referral for brain imaging (MRI).

The neurologists are very busy. In our case it took 4 months from visit with PCP to visit with neurologist then several more months until we could get the next appointment for clinical testing.

Quilting brings calm

definitely ask for blood work for B12 levels and thyroid function. Those can mimic dementia snd can be treated

tboard

https://alzconnected.org/discussion/73112/advice-on-next-steps-please

My DH was diagnosed by his regular doctor. A diagnosis is very important any way that you can get it.

sandwichone123

If he's working, make sure you find out about FMLA at his place of employment. You need to be aware that he may be fired and lose everything without any advance notice at all that you can see. He may be hiding several work problems and telling you that everything's fine (that happened to one of our members here).

The most important reason for a diagnosis in someone of working age is to be able to file for disability, so if he's changing rapidly I would consider it imperative to move toward a diagnosis ASAP.

Lgb35

my DH will be 62 in a month. We have had numerous blood tests to rule out autoimmune issues or vitamin B12 deficiency, thyroid issues etc. we had a spinal tap which was borderline. Lots of could bye’s over the past almost 6 years but nothing conclusive. We did just get an Amyloid PET scan which turned out to be negative for Alzheimer’s so we are now waiting for a FDG PET scan to help confirm FTD. He seems to be more semantic variant. We thought memory was the issue but maybe it was more of a naming issue. We know he will need to stop working soon so we are trying to get a diagnosis that is on the compassionate allowance list for social security disability.

SDianeL

if possible talk to the doctor before the appointment and give a list of behaviors and ask the doctor to tread carefully with the language he or she uses. Even fib and say the tests are required by the insurance company. Get the referral without telling your DH if possible. Tell him the day of the appointment that his doctor recommended some tests. The more vague you can be the more likely you will get him through the appts. He has Anosognosia which is a lack of awareness or insight into one's own cognitive or physical deficits. He won’t believe the doctor.

Dmarcotte

https://alzconnected.org/discussion/comment/243890#Comment_243890

Thanks for your advice - I do keep a journal to track his behaviors as they happen so I have specific details as many people here have advise. I will share that as well as the FTD checklist available online with the PCP before his next appt.

harshedbuzz

@Dmarcotte

FTDbv can be an especially challenging diagnosis for caregiver and family.

One of DH's former bosses had this and by the time he was diagnosed, his wife had divorced him, he'd transferred most of his assets to their respective children, bankrupted himself and gotten fired for poor performance. He'd been brilliant (youngest PhD at his selective university) and charismatic and it was a sad ending. You'll want to keep an eye on spending. I'd lock down your credit and check all your band and investment accounts regularly.

If you're only going to get a single stab at obtaining a diagnosis, you might want to consider a major teaching hospital memory center. I wouldn't wait for a referral if you don't need one as it can be upwards of 9-12 months to be seen. Before that, I would alert his PCP about what you're seeing and asl for the bloodwork to rule out other causes. Specifically, you'd want vitamins (B1 and B12) and thyroid. When mom was showing some memory issues and word-finding issues, he doctor also tested for Lyme which is endemic where we live. She did test positive and improved quite a bit with a course of treatment.

Good luck.

Dmarcotte

https://alzconnected.org/discussion/comment/244281#Comment_244281

Thanks so much for your advice - we actually live fairly close to a Mayo Clinic and I would love to take him there for evaluation.