Help Please

When I was in your exact position with my DH, I also told the PCP my concerns in the hallway before she went in the exam room. She set up another appointment, and at that 2nd appt, he did that paper test - drawing a clock, box etc. She called it a follow up appt to get him back in, and only after we got there, she handed him the testing papers and asked him to please complete them and she would be right back. He did very poorly and she told him she was concerned and asked if she could refer him to a neurologist. He was furious and refused. She said, “I promise … all you have to do is go one time for a diagnosis and then you do not have to continue seeing him.” After lots of coaxing, he finally agreed and she ordered an MRI etc, The neurologist diagnosed him with advanced cognitive impairment/Alzheimer’s after testing him verbally for 30 minutes or so. After that, we had the PCP handle his care as she promised.

Can you ask the doctor to administer that written memory test just to get things started?

My heart goes out to everyone that is in this situation at the beginning. And I don’t know if my husband would ever have agreed had his PCP been a male. I think her sweet disposition (and the fact that it was a female pleading with him) that got him agree to see the neurologist for a diagnosis.

Unfortunately many of us are too familiar with your experience. I kept telling his doctor "something is wrong with my husband." It was a year before the full diagnosis.

He was open to getting an MRI, which uncovered Lacunar Infarcts which result in Vascular Dementia. Once that was found, he was scheduled to meet with a Neuropsychologist (very helpful if your DH will undergo this 2-4 hours of testing). Her final report stated he was already in the moderate stages of dementia.

The Neuropsychologist's report led to a blood test which showed he has Alzheimer's. After the Neurologist gave him the Alzheimer's diagnosis, my husband refused to go back. His PCP (a gerontologist) is now taking care of DH's dementia meds.

If your DH is open to blood tests (maybe without knowing what it's for) here is the information for the blood test for Alzheimer's. Only Quest Diagnostics has this test, we were able to find a Quest Lab at our local Walmart :)

QUEST AD DETECT(TM), BETA AMYLOID 42/40 RATIO, P   

The A-beta 42/A-beta 40 ratio is a measure used in AD research to indicate the presence of amyloid beta proteins in the brain. The A-beta 42/A-beta 40 ratio is important because A-beta 42 is known to be likely to clump and form plaques, making it less detectable. A-beta 40 is more soluble and less likely to form plaques. Because of this, a lower ratio of A-beta 42 to A-beta 40 in the brain is associated with a greater risk of developing Alzheimer's disease (AD). 

An Abeta 42 / Abeta 40 ratio that is greater than or equal to 0.170 indicates your results are normal. This suggests that you have a lower-than-normal risk of having of AD. If your result is normal and you are experiencing symptoms of mild cognitive impairment (MCI), such as memory loss or difficulty making decisions, it is recommended that you share this information with your doctor about testing for other potential causes. 

A value of 0.150 to 0.169 may suggest an intermediate risk of having AD pathology. It is recommended that you share this information with your doctor to discuss potential next steps. 

A value of less than 0.150 may suggest a higher-than-normal risk of developing or having of AD and may suggest that follow-up testing (eg, PET, CSF biomarkers) is warranted to support a diagnosis of AD. It is important that you share this result with your doctor to discuss potential next steps.

In our area, there is a geriatric assessment practice. Once I was sure there was an issue, (I was in some denial) I scheduled that appointment. With our insurance, I didn't need a referral. They take a multidisciplinary approach and can help both of you if such a resource is available to you.

Do not be passive about blood or other tests. Find out what was ordered and what are the results; follow up on any abnormal findings. Your DH will mot remember what was discussed you will have to attend every appt with him.

Iris

I attend ALL appts with my DH.

When I go (went) to appointments with either of my parents, I sit behind them in the sightline of their doctors. Only mom's retinal specialist and derm do not have their rooms set up in this manner. This allows me to communicate with the clinician nonverbally— a head shake, nod or extreme eye-roll brings context to their self-reporting. IME, docs look for it. LOL, the one time I trusted mom to take dad to the PCP solo for a low-stakes appointment, the doctor asked where I was.

I also made sure their doctors have an online patient portal which allows me to communicate on a backchannel. I do have a HIPAA clearance and POA; he doesn't usually provide information in my direction, but he does take my concerns seriously. When I had a concern about mom's memory last spring, he had a MMSE ready to administer as part of her annual Medicare Wellness Exam.

The other piece to this is that getting to see a specialist can take some time. I have been on a waiting list to see someone at the university memory center that evaluated dad since May. When I do get an appointment, it'll likely be 3-6 months out. I'm OK with this in my situation as mom's fairly cooperative and has some other health issues that could render a diagnosis moot.

Please do your own research to find your neurologist. You will likely not need a referral.