All brain scans good: Could my husband still have dementia?

Hi there. I am not a doctor. I was a caregiver for my mom who had alzheimer's disease for 8, almost 9 years. I have kept up with the research being done and I write blogs on my experience with her caregiving. I will say this. Did anyone say anything about loss of brain volume? Any areas of his brain that appear to be smaller or shrinking? That is a key issue in diagnosing AD, among many other things such as behavior, loss of short term memory, trouble with finding words, unusual behavior. I have some good information on my website called A New Path for Mom (www.anewpathformom.com). Look under the tab Alzheimer's Disease and also Videos/Resources. I wish you the best. Love, Virginia

I know nothing about brain volume. Spoke to neurologist after SPECT SCAN. She said it was normal and come back in 3 months. I feel like I am floundering all by myself. Maybe we need better neurologist?
Thank you for replying. I will check out your website.

Hello @adv. What behaviors is your husband exhibiting that make you think of dementia? If the neurologist says it’s OK, maybe it is. The neurologist wants to see your husband in 3 months, correct? Why don’t you start a journal or a list of all the changes you see each day. Every little thing that has been bothering you. You can then take this when you go for the visit in 3 months. This should help to give you and the doctor a clearer picture of what’s going on.

Yes, I always help a list of things I noticed between Dr visits, and then gave that list to the nurse or Dr. when we went for an appointment. That way I didn't have to say anything in front of my husband. I always went in with him and only was out of the office when the Dr. asked me to leave, so she could examine him in private.

As this is so new to me, I appreciate your suggestion. I will do that. Thank you

Its bee a long time since I posted. Seeing new neurologist. Diagnosis dementia after testing. Seems his dementia a big problem with his body motions. Has neuropathy in legs. Very hard for him to move his legs & legs are very weakness. Extreme stiffness in his legs. Body in general very week.
When he received first diagnosis he was put on .5 haldoperidol 2 times day which successfully got rid of hallucinations for a long time. About 10 months.
It Has returned & haldoperidol .5 one in morning & .5 two at night. The Dr's nurse said it could take up 10 14 days to improve.
He got terribly worse the next 3 or so days & now a very little improved. He's not as tortured byhallucinations. He confused & basically weak. Dosing alot. Before the recent hallucinations appeared again he was totally into sports on TV but now when it's on he doesn't really watch.
As I said the torturous hallucinations have stopped & he's calmer now. I don't know if I have to be patient regarding the 14 days.
I hope I am making myself clear.
Any info would be greatly appreciated.
Angela

Hello @adv,

I have been reading with interest your narrative about your husband's dementia symptoms. I'm wondering if you or your doctor is familiar with Lewy Body Dementia (LBD)? It is somewhat different in the way it presents and it is often misdiagnosed for Alzheimer's or other forms of dementia. Here is a link from Mayo Clinic about the symptoms, diagnosis, and treatments for LBD, https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/symptoms-causes/syc-20352025. After you read about LBD, you might see how many of your husband's symptoms and behavior are similar. You might make a list of these similarities.

As you can see, the meds used to treat this type of dementia are different.

Have you considered a second opinion for your husband? Can you go to a Mayo Clinic facility? There are 3 Mayo Clinics (in Jacksonville, Florida, Rochester, Minnesota, and also in Arizona). If you would like to call for an appointment for any of the campuses, here is a link for information about appointments, http://mayocl.in/1mtmR63

If you would like to learn a bit more about LBD here are some more links,

Signs and symptoms of Lewy body dementia – September 3, 2020:
— https://newsnetwork.mayoclinic.org/discussion/signs-and-symptoms-of-lewy-body-dementia/

Mayo Clinic Q and A: Lewy body dementia and Alzheimer’s disease — what’s the difference? – March 4, 2017:
— https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-lewy-body-dementia-and-alzheimers-disease-whats-the-difference/

Leading NIH's Lewy body dementia initiative – Dec. 31, 2020:
— https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/leading-nihs-lewy-body-dementia-initiative/mqc-20505822

"The Lewy Body Dementia Association (LBDA) has designated Mayo Clinic as a Research Center of Excellence (RCOE). The LBDA has identified leading clinicians for advanced diagnosis and treatment and who are committed to providing advanced care, community outreach and support."
Lewy Body Dementia – Mayo Clinic Research: https://www.mayo.edu/research/labs/memory-disorders/research/lewy-body-dementia

I look forward to hearing from you again. Will you post an update?

@adv. I’m so sorry to hear of the difficult time you and your husband are having with his dementia and the drugs he’s been given. You mentioned the really bad hallucinations. What does the neurologist say about these?
Do you have a family member or friend who could sit with your husband while he’s dozing? I know at this difficult time you may be reluctant to have someone in the house, but you need to give yourself some time off to rebuild your energy. Do you think that’s doable?

My husband seem to be improving on the haldorel doubled at nite. In the last two days jut a couple that I know of. I am fortunate that one of my daughters is able to spend days here. My other daughter is in treatment for breast cancer so it's be a very difiult time for our family. And covid virus keeps us home bound.
If the hallucinations completely disappear as the did the first time I will be so happy.
He is very slow moving w a walker & His legs are very stiff. He is able to understand all thegoings on but talk very litle.
I don't recall if I mentioned that I am thainking of having him see a geriatric Dr for his legs problems. Any heights on that
Thanks for replying. I really appreciate it.
Anela
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@adv Yes, a geriatric doctor would be a great idea! Do you have one near you? They tend to be affiliated with larger medical centers. I live in SE Michigan and we have geriatric physicians affiliated with Henry Ford Hospital and also affiliated with the University of Michigan. My mom passed away at age 93, but a geriatric physician was very helpful during a hospital stay. He provided some good ideas on med changes.