How did you get a diagnosis, and then what do you do?

Jazzma

My DH was diagnosed with 'likely' Alzheimers five years ago, based on an MRI (hippocampus at 1% of normal size) and repeated cognitive tests. He has been declining since then, but how do I know it's Alzheimers? Could it be Lewey Body? Does it matter? His doctor seems to be only interested in the annual Medicare physical, and the few visits we made to neurologists were largely repeats of the cognitive tests until he refused to do them any more. We saw a naturopath who prescribed some herbal treatments. I don't know where to go from here. Ideas?

Jgirl57

For my HWD, after all the MRI, neuro tests, blood work , the neurologist recommended the Lumbar puncture ( my HWD tolerated this well) . The results were “ pathology consistent with Alz.”

I needed that info to help me focus and get on with planning for the future. Best wishes to you.

Denise1847

Dear Jazzma,

Our internist did a cognitive test, which showed mild cognitive decline. He then ordered an MRI which showed some brain shrinkage. He referred us to a neurologist who just repeated the cognitive test and both concluded that he had dementia/alz. The neurologist asked if he wanted to do more extensive testing, but we discussed it and he declined it. The neurologist said there was no cure, just meds to slow it down. So, we said what is the point as to what type it was as the treatments are all the same.

Ed1937

Denise, and others. Treatments are not all the same, even though most are. Some types of dementia, like Lewy bodies and fronto temperal (I think) the symptoms are often worsened by some meds used for other dementias. Other than the medication issue, IMHO it shouldn't make too much difference in the type of dementia one has.

Dio

It kind of does matter what is causing the cognitive decline. Some causes, like vascular dementia, are actually treatable especially if caught early on. I'm no expert nor a doctor, however, I've learned a lot from support groups and doing my own research. My DH's neurologist said that treating Alz is different from Lewy Body or Frontotemporal dementia. The last PetScan DH received had definitively ruled out Alzheimer's. So moving forward, medications will be prescribed along the lines for LBD. For example, DH had been suffering from nightmares and disruptive sleep. The neurologist prescribed Melatonin instead of other antipsychotic meds. It didn't work at first, but it started working in time. While each person is different and will react to meds differently, getting a more accurate diagnosis early on helps.

Dio

Jazzma, back to your original question... my DH was first diagnosed with Frontotemporal Dementia based on an MRI showing shrinkage in the frontal lobe. Then after more blood tests to rule out other possible causes and behavior changes as the disease progressed, he was diagnosed with probable Lewy Body. Then we saw another neurologist who wasn't convinced DH had LBD given that he didn't present the core symptoms of LBD and was ruled "Atypical Alzheimer's" with probable LBD. (Some people can possess more than one dementia disease). After more specific PETScans were done, no beta amyloid plaques were found; hence, Alz was ruled out. We're back to LBD. Just based on what I've learned, DH falls into the minority group of LBD sufferers who don't present all of the core symptoms. And from a clinical standpoint I totally understand why it's officially labeled as "probable LBD," because it can't be confirmed until postmortem. LBD presentations are much harder to predict, with fluctuations quite rampant, not to mention the psychosis component that is downright scarier than hell.

Jeanne C.

When we got the FTD diagnosis it was based on atrophy in the frontotemporal lobes and behaviors. The meds are different (some Alz meds can actually exacerbate symptoms of FTD). Is there a memory care specialist practice available to you? My husband is being seen by Swank Memory and Geriatric Care in DE. The practice includes geriatric specialists, psych, neuro, and social workers. They've been a huge help in getting meds adjusted and getting me up to speed on his care needs. PLUS they've helped me with daycare and certified elder law referrals. His NP even sat with me to go over MC facilities for when we need one. If you can find a specialist you can most likely get a better diagnosis and some good advice. All the best to you - this is hard stuff but you're doing the right thing by seeking advice.

Jazzma

Thank you all for your comments. In part I'm responding to family pressure to 'do something more' as he declines. Lots of emails about dietary issues, effects of exposure to mold, etc. Meant to be helpful, I think, but in fact just depressing and irritating. I'm fortunate in that he remains sweet and loving as he gets more confused. It's still really good to have him around. I'm seeing an elder care lawyer next week to go over legal/financial issues, and have visited a few local MC facilities.

Thanks for sharing your stories. This is harder than I could have imagined.

Jgirl57

I know what you mean by family/friends mean well and want to be helpful. That us why I find comfort/action ideas here on this forum. My HWD /Alz. takes Aricept, did not do well on Namenda, and takes Zoloft for anxiety-depression ( me too but a lower dose). I try to give a healthy diet and keep us active but all that gets harder as time goes on. I just tell well meaning friends “ thank you” when they send me information. Hang in there

Ed1937

Dio said "It kind of does matter what is causing the cognitive decline. Some causes, like vascular dementia, are actually treatable especially if caught early on." And that's why you should get a diagnosis. To see if there is something treatable, and there are many things that are.

Crushed

Quacks will rob you blind. There is a Nobel prize out there for anyone who can do anythng significant about Alzheimer's. Lots of very smart and skilled folks working on it with no real progress but Quacks will steal every cent you have. My wife is stage 7 She was a physician a very good one and we live next to NIH. she had been on staff at Johns Hopkins. She was first diagnosed 13 years ago at the age of 58. I taught science based safety regulation including FDA law.

This is a tough row to hoe but dont get swindled by quacks

Differential diagnosis of dementia is very difficult in early stages

sandwichone123

Not everyone here may agree, but unless the family with the "helpful" comments are helping in some real way most weeks (like taking you or him out to lunch so you get a break), I would just tell them, "wow, thanks," and go on with your lives. You don't have the bandwidth for people telling you what to do when they don't have a clue.

tgeno

My wife was diagnosed with early stage AZ dementia after a thorough exam by a neuropsychologist to which we were referred by our neurologist after she failed an in office exam for dementia. She is doing better on Aricept, but I have no illusions about this incurable disease. Medications can help slow the decline but not cure. I would stay away from nueropaths who haven't a clue. Our family also is realistic about the diagnosis and is supportive. I would continue to frequent message boards like this one. The Mayo Clinic also also has an online forum for dementia caregivers. If there is a support group near you, go to their meetings. ALZ.org can help you find one.

mrahope

FWIW, I noticed declines in my DH first. We went to our PCP and he ordered tests to rule out some of the common non-dementia causes of these declines. We were then referred to a neurologist, who then sent DH for neuropsychological testing after the MRI he had showed nothing significant. Those results showed he had MCI (end of 2021). Neurologist did not believe it was Alzheimer's at that point, and said so.

Declines continued and in autumn 2022 he was tested again. It was a terrible experience, with him yelling at the examiner and demanding to know exactly what tests they were giving him. DH was a clinical and forensic psychologist by training. They were so afraid he would walk out that I had to wait in the parking lot, although most patients' relatives can leave and return. This testing rated him as having "mild dementia". He was given Aricept but could not take it as it brought on an asthma attack. Prior to the latest appointment (3/23), he was ordered a carotid ultrasound, which failed to shed any further light on what type of dementia he may have. As of the latest neurologist appointment, this is as much diagnosis as I have. I have to wonder, at age 84.5 is there any point in going further? I will if the doctors can explain how it might help.

Ed1937

Mrahope, if they have ruled out all other possible causes, I would not worry about it unless he has problems with medications. Some types of dementia cannot take medications commonly used for dementia, so if that is an issue, he needs a diagnosis.

paulp

I found a book that discusses vitamin B22 or normal pressure hydrocephalus as common causes of dementia, however the medical and drug industries can’t make money treating these. Any truth to this?

paulp

I am new to this situation. My wife started to have balance problems. We have seen two neurologists. One thinks she is not sleeping well, the other says Alzheimer’s from a cat scan after a fall. However I have read that Alzheimer’s can’t be diagnosed from a cat scan. She gets up many times at night so sleep quality must be an issue.

Iris L.

Vitamin B12 deficiency and normal pressure hydrocephalus are NOT common causes of dementia. The non-terminal dementias make up only about ten per cent of the dementias. They are not common, but it is worth searching for them, because they may be treatable if caught in time.

Vascular dementia is related to cardiovascular disease, which mostly is not curable, but may be managed for some time. Often overlooked causes are sleep apnea and CTE. Also many medications cause memory side effects. Check everything out.

Once a presumptive diagnosis of dementia has been made, the "treatment" is to manage symptoms and to make the patient and family comfortable. We adjust as conditions change. We learn from those who have gone before, and we do the best we can.

Iris

Ed1937

Paulp, I agree that the criteria for making a proper diagnosis is important to see if there are other causes for the symptoms. And I also don't believe those are common causes of dementia. But I do agree that a cat scan is not close to being enough to warrant a diagnosis. All other possible causes must be considered for a proper diagnosis. Even with all the proper testing, you might not get a diagnosis of any particular type of dementia. It might come back "unspecified dementia" or something similar.

blue

Went to neurologist. Started with Cpap adjusting, then to MRI and cognitive testing which indicated MCi due to Alzheimer’s. We then went to Mayo and
had spinal tap and PET scan.
Along with the typical meds, we were told to exercise 45 mins daily vigorously to get oxygen to the brain and to give DH monthly B12 injections. (I learned to do it myself instead of taking him in monthly.)
Had a panic attack. Got help.
Then I did a deep dive into any published, and some unpublished, treatment studies for the past year and a half. Jumped in on one for DH - and a study for me (using tech devices in the home for care providers).
I sold our house of 30 years to move to AZ to be closer to a young married son. Bought a house with an attached apartment for eventual help in exchange for room and board. (Houses are much less expensive in Sun City than almost anywhere.)
Now am trolling ALZ groups 🤣 looking for a friend in the same situation just to take a walk with to make it all hurt a little bit less.
So am throwing everything at this. I am not as full on as I sound. Just trying to
make it through.

paulp

Thanks for the remarks, Ed1937 and Iris L. I started giving my wife vitamin B12 gummies about a month ago. Her level has since doubled. from 245 to 512. She is doing much better the past week, but we also got here to a sunny climate about a week ago. She also has a history of depression, but a neurologist said to stop the Paxil, so we did about 3 weeks ago. Is it possible that a combination of causes can exhibit as dementia, and if addressed, the dementia mostly disappears?

jfkoc

Yes. Some causes of dementia are treatable that is why they are ruled out at the beginning of the diagnosis process.

Chammer

If you watch much by Tam Cummings, she really recommends determining what type of dementia a person has. She notes that behaviors, but particularly physical symptoms such as falls are different in the different types of dementia - and forgive me if I mess these up because it has been a minute since I watched the video - either Alz or VD patients fall but sort of just "sit down" so it isn't recognized early on as falling if they are getting up from a chair and just sit back down sort of hard; LBD patients falls forward very stiff and board like which results in facial and head injuries. Below is a youtube link to her talk on types of dementia which has some of that info.

https://www.youtube.com/watch?v=wpqo6FrzwRs&t=14s

Iris L.

Why did the neurologist stop the Paxil? What to replace it with? Does she have a regular psychiatrist? What is that doctor doing for her?

Iris