jimcrist wrote:I have a good friend (age 72) who’s been suffering from cognitive decline for two plus years now. His wife retired a bit early and he’s been going to a neurologist for a 1.5 years or more. His decline is significant and getting worse.... Both the neurologist and the functional medicine practitioner have looked at the images and say that his volumes look good and they don’t see any plaques or tangles. They say that if he had Alzheimer’s, it would show up on the MRI and it doesn’t, so he must have some other kind of dementia. Does that sound right??
Also, he hasn’t had his APOE status checked yet. Should he have that done via 23orMe or…? Other than curiosity, how would that help??
Thanks so much for this wonderful forum!!
I'm so sorry to hear of your friend's struggles, and yet very glad that he has your friendship and the love and support of his wife. It sounds like both of you see him as a person with needs, rather than a needy person. Here are just a few thoughts on the questions you posed:
The neurologist and FMD are saying this must be another form of dementia. There are other diseases which cause dementia, with many of the same effects as Alzheimer's and yet don't show up with the same level of amyloid plaques and tau tangles, or with the same pattern of atrophy as Alzheimer's. Maybe you could suggest to your friend's wife that she ask to schedule an appointment with the neurologist to ask what other dementia it might be. Or even offer to go with both of them to take notes so they don't have to worry about getting all the details and names down correctly. Of course, that's only if it is important to them to have a specific diagnosis.
Having been through several MRIs as part of a clinical study, I hesitate to suggest that your friend be subjected to all that banging noise again. It's possible his doctors feels the same way. I assume his neurologist regularly checks his behavior, visual and spatial skills, memory, language skills and motor skills, all of which can also help to narrow a diagnosis. If that isn't the case, it's possible that a regional memory center (often connected to a university or hospital system) would be able to provide a comprehensive assessment for free, since Medicare would (I assume) cover the cost.
Here's an article from 2016 that suggests that it can be difficult to conclusively diagnose dementias using just a visual readout of an MRI without combining several features of the MRI. When the article mentions "sensitivity" it refers to how accurate is the rate of "true positive" results. (Ex. My clinical study can report that I had a "normal" MRI earlier this month, but they don't tell me whether that means I have any signs of subtle changes in my blood-brain barrier, my functional connections between the left and right hemispheres, my speed of processing, the health of individual cells below the level of obvious atrophy, or how well I remember the plot of the movie I saw last night. Those skills my change significantly before the damage would be obvious on an MRI, I believe.)Differential diagnosis of neurodegenerative diseases using structural MRI data
Vascular dementia patients could be detected with high sensitivity (96%) using features from FLAIR images. Controls (sensitivity 82%) and Alzheimer's disease patients (sensitivity 74%) could be accurately classified using T1-based features, whereas the most difficult group was the dementia with Lewy bodies (sensitivity 32%). These results were notable better than the classification accuracies obtained with visual MRI ratings (accuracy 44.6%, balanced accuracy 51.6%). Different quantification methods provided complementary information, and consequently, the best results were obtained by utilizing several quantification methods.
As for testing for ApoE 4, I don't know that it would change the recommendations now, nor would it definitively rule Alzheimer's in and other dementias out, or vice-versa. I hope that the FMD is able to provide useful and supportive suggestions to your friend and his wife.
I would also gently suggest that while your friend's wife may want to be very strong and independent, it can be a wonderful help to connect with the local Alzheimer's Association, which supports families with all kinds of dementia-related conditions. I have a friend who runs a support group for spouses of people with dementia, having lost her son to frontal-temporal dementia, and she sees every day the benefit for people who can problem-solve small and big issues with others who are care partners to loved ones. Even if she doesn't feel the need for a support group, the Alzheimer's Navigator tool https://www.alzheimersnavigator.org/Default.aspx
offers a wealth of information and ideas.
As a 67 year old with ApoE 4/4, I view people like you and your friend's wife as the first responders and lifesavers in this journey. Hugs to you both, Jim.