More Than Caregiving

The new truth about life with aging parents

Genetic Testing for Alzheimer's: Would You? Should You?

Knowledge may equal power, but it doesn't always feel that way.

It's a test in which your body already holds the answer. But when in comes to Alzheimer's, would your mind want to know what your body already does?

An April 3, 2011 article in The Guardian reported that "scientists have discovered five gene variants that raise the risk" of the disease. 

Thinking about guidelines for Alzheimer's early detection leads to natural questions about the anxiety wrapped around (and up in) testing for HIV. While HIV and Alzheimer's are unrelated, the feelings around finding out one has either are likely similar. Knowledge may equal power, but it doesn't always feel that way for the patient and family.

As a healthcare worker/provider, I think the progress in searching for how to identify the disease of Alzheimer's, as well as a cure, is nothing short of fantastic. And necessary. But also, I know, from my work with patients, how frightening it can be to discover the body--your body--is one that carries that variant. Then: anxiety.

Anxiety is not exactly a new phenomenon. And worrying has never been found to help a situation. But, you know, have you ever been a patient? Ever known a patient? Then you understand the fear of "finding out" if a test is positive or negative--despite the hope contained in discoveries like the one by scientists mentioned above.

Find a Therapist

Search for a mental health professional near you.

As we move closer to having more tests that can detect Alzheimer's (and other diseases sooner)-and before a cure (a vaccine, maybe? ) is created-I advocate equal attention be paid to helping patients--and their caregivers--manage the anxiety produced along the way. Not just lip-service attention, but funding for counseling and support. It's one thing to study anxiety in a clinical way and discover that (surprise!) people who undergo medical procedures have it. It's quite another to address these issues, to provide counseling and emotional support.

Among other things, anxiety causes people to isolate and turn inward, to think the worst and lose hope. These are side effects of such testing. That doesn't mean we don't test. It does mean, however, that we consider what "knowledge is power" means, in a real-world way.

For a clinical view, once again I turn to Dr. Barry Rovner, a professor in the departments of psychiatry and neurology at Jefferson Hospital for Neuroscience, in Philadelphia, PA, in regards to genetic, about family members of persons with Alzheimer's disease (AD) being concerned about their own risk, and more.

"Genes are clearly involved in the development of AD but, except in rare instances, they are not the sole causative factor. Other determinants include hypertension, diabetes, and hypercholesterolemia, as well as education, social engagement, and diet." He said these additional factors are influential in whether someone develops AD in late life.

"Having a first degree relative with late-onset AD increases one's risk to about 17%, relative to about 5%, in someone without a family history. In families where an affected person is in their 50's or 60's when the disease begins, genetic factors are more important."

In these families, Dr. Rovner said, "if multiple family members have been affected, genetic testing may identify specific gene mutations. Such cases are very rare and account for fewer than 5% of all cases of AD." He said, that, for this reason, genetic testing is generally not part of the evaluation of patients with dementia.

"This is also true for testing for the apolipoprotein E-4 gene, which is more common in individuals with AD than in older individuals without dementia. Although this gene is associated with late-onset AD, it is also found in many older persons who do not have AD and is not present in many patients who do have AD. Thus, it does not increase diagnostic accuracy or predict the future development of the disease. In general, because test results require careful interpretation, genetic testing is best done in conjunction with experts familiar with AD genetics--like at an Alzheimer's Disease Research Center."

 

 

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

more...

Subscribe to More Than Caregiving

Current Issue

Dreams of Glory

Daydreaming: How the best ideas emerge from the ether.