Caregiver Insights

Caregivers Suggestion

Genetic Testing?

Dementia is more than a personal illness. It changes other family members’ outlook, behaviors, and relationships. Of course, there is grave concern and deference for the family member whose life has been derailed. And people with dementia become a focus of family attention for the months and years that lie ahead. But the consequences of dementia are additionally concerning for younger family members who understand that there may be a genetic link that increases the risk they could face a similar fate in the future. This article will briefly summarize currently available information about genetic testing and its efficacy.

Each of our chromosomes have thousands of genes made up of DNA that provide instructions for how our bodies develop and function. Changes in three APOE genes result in the production of abnormal proteins that are associated with Alzheimer’s. In clinical studies, genetic tests are used routinely to diagnose the risk of developing Alzheimer’s or a related dementia. Testing helps scientists look for early brain changes and compare the effectiveness of possible treatments. Testing could also help people who want to know whether they have an elevated genetic risk. This might influence retirement planning, help them structure advance directives, and consider caregiving preferences.

It is important to understand, however, that testing is not able to reliably predict who will or won’t develop Alzheimer’s. That means that a positive test does not mean a person will get Alzheimer’s and a negative test does not mean they won’t. A positive test can, however, result in increased anxiety and depression, adversely affecting their lives.

Whether the test result is positive or negative, nothing changes the recommendation that the following behaviors will reduce the likelihood of contracting the disease:

  • Eat a healthy diet: leafy greens, berries (especially blueberries and strawberries), whole grains, beans and lentils, nuts, fish rich in omega-3 fats, poultry, olive oil, a limited amount of red meat

  • Control blood pressure

  • Aerobic exercise regularly

  • Sleep well

  • Avoid smoking

  • Stay socially engaged and mentally active

Since testing currently is not conclusive, the American College of Medical Genetics and Genomics, National Society of Genetic Counselors, and Alzheimer’s Association do not believe that asymptomatic people should use APOE testing for routine predictive tests.

This position is further supported by other increased risks associated with positive test results. The Genetic Information Nondiscrimination Act (GINA) generally prohibits health insurers and employers from using genetic information. However, GINA does not cover long-term health insurance, life insurance, or disability insurance. Thus, positive test results could adversely affect a person’s insurability.

In summary, APOE testing is a good tool for estimating risk but not for making individual predictions. It is not recommended for most people because it would not change recommended behavior, would only rarely change medical management, and can have negative psychological and insurance implications. An exception to this general rule might apply to people who have a family history of early-onset Alzheimer’s disease. In any case, genetic counseling is strongly recommended before testing is undertaken.

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