What's the best way to get an accurate diagnosis of Mom's level of Dementia?

At this time, there are no conclusive medical tests for dementia. Even the type of the dementia can only be determined by an after-death study of the brain. Such brain studies have revealed a high level of wrong diagnoses, even by highly reputable dementia centers. Researchers are urgently seeking biomarkers that will be useful diagnostic indicators while the patient is living. Wouldn't it be great if a blood test or urine test or some kind of a brain or body scan could tell us the exact nature of the dementia?

Until then, doctors rely on observations of symptoms and various tests that are helpful but not conclusive.

All that said, I suggest a behavioral neurologist or a geriatric psychiatrist to evaluate your mom.

As for the level of dementia, that is also determined by observation of behaviors and symptom. If your mom has Alzheimer's you can easily find a list of the stages online and probably can come up with a pretty good guess yourself. This would be good to do before you visit the doctor, so you have a starting point for discussion of this issue.

Caregivers and loved ones nearly always want to know "what stage is she at?" or "what is the level of his impairment?" Having made the dementia journey with my husband for 10 years and participated in caregiving support groups, I can tell you that this is seldom as important as we initially think it is.

Alzheimer's usually progresses in recognizable stages, in roughly a consistent order. But each case is different. Other kinds of dementia do not follow such a pattern. There is perhaps a mild, moderate, severe distinction but not a "stage 3" and "stage 5" distinction.

If you did find out that your mother is at "level 5" what would that really tell you? You still wouldn't know if she would remain at that level for 2 more months or 4 more years. You still wouldn't know if level 6 symptoms would be severe for her or mild. As far as treatment plan goes, you still have to deal with whatever symptoms are presented on any given day.

It is time for AL (maybe a "memory care" unit) when the person can no longer safely live alone and there are no resources that can compensate for her impairments. If someone can manager her medications, oversee her meals, keep her house clean and do the laundry, etc. then she can stay at home longer than if she didn't have such help. If she has other conditions, such as mobility issues, then she may need a care center sooner than if dementia is the only condition. In other words, the time for AL has to be decided on a case-by-case basis.

My husband was able to remain at home the entire 10 years of his journey. But that is because he had a live-in caregiver (me). If he had lived alone I don't think casual in-home help would have been sufficient to keep him safe. I always told our kids that if something happened to me not to let their dad fool them into thinking he would be OK alone.

My mother, on the other hand, continued to live on her own, with lots of support such as meals-on-wheels, a visiting nurse, a homemaker, and weekly visits from more than one kid, for about three years with cognitive impairment and mild dementia. When this became unsafe we found an AL for her but then one of her daughters decided to take her in. That seems to be working well, but it is very clear that she could not have safely continued alone.

As you know, there is no cure for dementia, but symptoms can often be addressed to improve the quality of life. It is very important (in my opinion) that you have Mom evaluated by a professional who is very experienced with dementia. Then you will have a baseline for a treatment plan and for treatment of symptoms that may arise in the future.

You will still have to take this journey day by day.

All I can say here is that Jeannegibbs said it all - beautifully. Thanks Jeanne and Rachel, take care of yourself by staying in touch on this forum and other support options including studying the Alzheimer's Association site at www.alz.org.
Best,
Carol