More Than Caregiving

The new truth about life with aging parents.

Can Alzheimer's disease only truly be diagnosed upon an autopsy?

And how can we tell one type of dementia from another?

It seems that Alzheimer's disease is often mistaken for other dementias. We might refer to memory loss in a parent, for example, as Alzheimer's when we're not exactly sure that's what it actually is. In a way, the term acquired a somewhat pedestrian status, the ubiquitous catch phrase we choose to describe a momentary (mid-life, for example) period of forgetting something. Of course, Alzheimer's is far more than momentary forgetting (or the annoying mid-life forgetting of things). 

I wondered, is our blanket use of the term "Alzheimer's" actually a problem, especially when it comes to differentiating the actual disease from other forms of dementia--when it comes to treatment, prognosis, expectations? 

Should caregivers and patients need to be able to know how types of memory loss differ, because pharmacological therapy or other therapies might vary? Or that their roles in caring for a loved one--the interventions they might need to take--might be different between the "two?"

Dr. Barry Rovner, a professor, in the departments of psychiatry and neurology at Jefferson Hospital for Neuroscience, in Philadelphia, PA, took these questions (and many, many more) to heart. (He's definitely the right person to ask. Researchers there were recently awarded a $2.6 million grant from The National Institute of Health to study whether increasing participation in cognitive, physical and/or social activities prevents cognitive decline in older African Americans with Mild Cognitive Impairment (MCI).  Dr. Rovner, along with Dr. Robin Casten, Ph.D., will be the lead researchers for the study. )

Over the next several weeks, I'll be sharing his insights—he's great at translating complex topics into language we can all understand—on diagnosis, meds, specialists, what families should expect from their doctor and genetic testing as related to Alzheimer's disease.

When it comes to accurate diagnosis, here's are some of the elements to keep in mind if you suspect a parent has memory loss, and why an accurate diagnosis is important.

"In older persons who have gradual and progressive memory and other cognitive losses that interfere with everyday functioning, the cause is most often due to Alzheimer disease (AD). Nevertheless, other causes of dementia [i.e., an acquired loss in cognitive function that impairs memory, language, executive function (e.g., problem-solving), and visuospatial function and results in disability] include cerebrovascular disease (i.e., small strokes), Lewy Body Dementia, Frontotemporal Dementia, Parkinson disease, Normal Pressure Hydrocephalus, depression, adverse effects of medications, and medical conditions such as hypothyroidism and vitamin B12 deficiency. However, AD is not often mistakenly diagnosed when one of these other conditions is present. It is nevertheless important for caregivers to be aware of the possible causes of dementia and to ask their physicians about how they arrived at a diagnosis of AD.

"An accurate diagnosis is important because different conditions have different treatment implications. Depression, hypothyroidism, and vitamin B12 deficiency should be treated with appropriate medications. Unnecessary medications should be discontinued. Risk factors for strokes should be managed. Current treatments for AD may help patients who have Parkinson's Dementia, Lewy Body Dementia, and dementia due to cerebrovascular disease. The evidence supporting the use of these medications for the latter conditions, however, is not strong as with AD. Caregivers of persons who are diagnosed with any one of these dementia syndromes face similar caregiving issues. For example, a recent national survey of 524 informal AD caregivers found that increasing memory loss, confusion (i.e., a lack of coherence or clarity of thought), and safety risks were caregivers' greatest concerns. A valuable family resource to address these concerns is the 36 Hour Day by Nancy Mace and Peter Rabins.

Which led me to my other question, in regards to diagnosis: Can Alzheimer's disease only truly be diagnosed upon an autopsy?

According to Dr. Rovner: "Although no diagnostic tests are currently available that have 100% accuracy for AD, experienced physicians can correctly diagnose AD about 90% of the time. This happens when the physician:

"1) obtains a history of gradual cognitive decline, wherein family members also report that a person's functional abilities have declined (e.g., manage finances, prepare meals, take medications competently),

2) demonstrates objective evidence of cognitive deficits, particularly in "short-term" memory,

3) finds no neurological signs that suggest another condition (e.g., Parkinson's disease, stroke), and

4) sees no abnormalities on brain imaging studies (e.g., CAT or MRI scans) and laboratory tests that would indicate an alternative condition."

"An exciting new development is biomarkers that indicate the presence of underlying AD pathology. These tests are now used to increase diagnostic accuracy in research projects but are not generally used to diagnose individuals in the community. These tests rely on analyses of spinal fluid to measure levels of beta amyloid and the tau protein, which accumulate in the brain in AD. New PET scans that reveal the presence of amyloid in the brain suggest that someday we will have tests that indicate disease pathology, possibly before someone has even developed symptoms."


 



Subscribe to More Than Caregiving

Meredith Resnick, L.C.S.W., is a health writer and licensed social worker. She is also the mother of two adopted daughters.

more...