Do I need to know what kind of dementia my Mom has?

I just had a brain MRI (for hearing issue) and part of the findings were "consistent with mild to moderate chronic small vessel ischemic changes." Goodness! What does that mean? (I haven't talked to the doctor yet.) I looked it up and apparently it can be linked to a number of cognitive problems, but it is extremely common in my age bracket, whether there are cognitive issues or not. I take it this is what "typical for someone her age" means.

Would it be useful to know what kind of dementia your mother has? At this point it would be useful to science if she were enrolled in a study. It MIGHT be useful in coming up with a treatment plan or in understanding her symptoms. But we know so little about how to treat the various kinds of dementia that being able to differentiate among them may not be as valuable as we wish. This will change as research progresses, but right now even if you knew that mother had XYZ type dementia, there aren't likely to be any specific treatments for XYZ in any case.

There are very few biomarkers that allow for diagnoses of type of dementia in non-intrusive ways. Autopsy is often the only way of identifying what was going on in the brain. While that is very useful for research, it is of no practical value to the patient or family. (My husband donated his brain for this kind of research.)

Here is an important consideration: The different kinds of dementia have different symptoms and progress in different ways. Even within the same kind of dementia, individual cases vary a lot. So if the care center or day care program or hospital staff -- anyone who deals with a "dementia" patient expects all patients to match some predefined "typical" case, that will be a problem. But if they are better educated and flexible in their approach then the exact diagnosis isn't so important.

Case in point: A nursing home staff was sure a resident was being manipulative and "faking" symptoms, because they seemed to come and go. Something he could do in the morning he claimed he couldn't do in the afternoon. None of their other dementia patients had this much and this frequent variation. But that is a core identifying feature of Lewy Body Dementia (which is what he had). So in a way it would be good to identify what type of dementia people have. But for now it would be cheaper and more convenient to simply treat each person as a unique individual and deal with the symptoms they have, without regard to some supposed "typical" dementia pattern.

cwillie, I do believe that one benefit of a specific diagnosis is for the caregiver. I knew that my husband had Lewy Body Dementia, and that led me to join a specific support group, and also to learn a lot about that disease. I think that indirectly helped my husband because it made me a better caregiver.

We never did know what kind of dementia our mother had. By observing the symptoms I would say it was not ALZ, and I'm definitely sure it wasn't LBD. It might have satisfied my curiosity to know, but I doubt it would have made any difference at all in my mother's care.

If it were easy to get a differentiated diagnosis, why not? But it is not easy, not inexpensive, not highly accurate. I don't think that putting my mother through more tests, interviews, etc. would have been worth the effort for her. As diagnostic techniques become refined, and as effective treatments become available, this will all change.

For now, the biggest benefit is probably for the caregiver.

Does it matter in the long run...probably not.
Does it matter during the course of their lives?...maybe.
A person with Lewy Body Dementia can not take certain types of medications. But Lewy Body is usually in people with Parkinson's so if she does not have Parkinson's It probably doesn't matter.
Vascular Dementia on the other hand is different. The Dementia is worsened by small strokes. And at some point there may be a major stroke that you may have to deal with. Either the person (and caregiver) is lucky enough to not survive or unlucky enough that it is one that they do survive and are left with not just the result of more decline but more physical problems as well.
The "normal" decline of one with Alzheimer's is a slow and steady decline. (Like walking down a ramp)
The "normal" decline of someone with vascular dementia is sudden drops. (Like walking down stairs.)
My Husband never got an "accurate" diagnosis and I think he had both Alzheimer's and Vascular Dementia's. His decline was slow and steady like walking down a ramp with sudden steep declines just like he came to a landing on the ramp that forced him to take a step down to another ramp of decline.
Did not knowing make a difference? Not really. I would not have changed what I did and it would not have changed the ultimate outcome.
So the ultimate person to answer this is you and you knowing your Mom.
Can she withstand the testing?
Can she cooperate during the testing?
Will she have to be sedated during any of the testing and how will she react to the sedation?
Is she otherwise healthy?
Have you discussed the outcome of any testing and whatever it may uncover?
If she has Alzheimer's or other form of dementia and problems are discovered during any testing what will you do with the results? (example: during a full physical the doctor suggests a colonoscopy? would you elect to do it? If you do it and the results show cancer will you elect to treat or not?)
Do you/she have a P.O.L.S.T. (used to be a DNR) in place? A P.O.L.S.T. is more detailed than a DNR
All very tough discussions but these are conversations that are best had as early as possible or you will be left making the call.
And if you have siblings they need to be kept in the loop and be made aware of decisions that your Mom makes.

I agree with most of what jeannegibbs has said, BUT I still wish I had had a definitive diagnosis for my mom, or any kind of diagnosis at all. I spent a lot of years trying to figure out what was going on with her and making decisions based on the belief she was much closer to the end of her life than she turned out to be. Maybe it wouldn't have made any difference in her life, but it might have spared me a lot of frustration and self doubt.

Cwillie,
You probably could have saved Mom from a diagnosis that would have led to many medications, that (in some people's opinions), would have led to a more rapid deterioration. I think for you, and for your Mom, you did good, really good!

Is you mom seeing a geriatrician? Or a family type PCP. You need a geriatric specialist or a neurologist.

My mom has some sort of dementia. It has been helped a little with aricept. She has had some cognitive testing and passes parts of the test with flying colors. If you ask her to draw a clock face and then put hands at 1:00, she can't do it. Sometimes she is confused about the day, time of day or things on her calendar. At the same time, she can use an iPad and send me text messages. She is 86. I think if she had been exhibiting signs of mental decline years ago I would have suggested testing. I'm not going to put her through it now. She seems happy and functions at assisted living. I feel like I don't need to know what kind of dementia it is at this point.

There are a lot of good answers here. As the neurologist/author of the book “Grain Brain” would tell you, the current drugs for Alzheimer’s do not work, and it is a shame they are prescribed. Dr Dale Bredesen of California has reversed Alzheimer’s in nine people and is now, along with his team, working with 100 more patients. However, he is doing it through nutrition. For example, as we age, the brain has trouble processing sugar. It is glucose (sugar) that the brain uses to function. If the brain cannot use sugar, then we have problems such as Alzheimer’s. However, the brain can still use keystones. Keytones can be introduced to the body via coconut oil and MCT oil. Fortunately, both can now be taken in powder form and purchased at GNC. Each come with a measuring spoon, and I take one measuring spoon each three times a day. You can put it in a smoothly, which I do from time to time, though that is time consuming. So, I generally just mix it in pomegranate juice or orange juice. It does not mix that well, but it still tastes good. So, that is one idea of treating dementia via nutrition. It takes more work but it works. Knowing what kind of dementia your mom has will possibly help if a nursing staff knows how to handle each type, ie what to expect from each kind. My advice is 1) make sure you are the medical and financial power of attorney, 2) prepare yourself emotionally and physically for what could be a challenging journey, and 3) consider what I have stated about the GNC products. To learn more about what you can do for your mom nutritionally, get the new video series “Awakening to Alzheimer’s” or at least get the book “Grain Brain”. And keep in mind that 1) the medical community has spent $600 billion dollars on Alzheimer’s research and they are still chasing their tales and getting nowhere and 2) it can all be prevented in the first place via nutrition...but, the drug companies don’t want you to know that and 3) much of Alzheimer’s starts in the gut and not the brain, so get Mom’s eating turned around...promptly! I wish you all the best.

Are the meds she’s on helping? If you don’t feel they are, call her PCP and tell them. What tests were originally done for Mom? Did she have any scans, like an MRI? If so, the neurologist probably won’t do anything different. If it would set your mind at ease and Mom is on board with it, go ahead.

Anerus, “typical for her age” means nothing alarming stands out, no tumors, lesions, etc.