Would You Want to Know?

Would You Want to Know?

When I give presentations on Brain Health and Cognitive Stimulation Therapy I am often asked about genetic testing for Alzheimer’s. Individuals are wondering if they should get tested to see if they carry the genes that predispose them to this disease.

There is a lot of angst inside of people who have a family history of Alzheimer’s disease. A part of them wants to know and the other part would prefer to remain in ignorance. It is a dilemma that is difficult to solve.

If you were faced with this choice, what would you do?

It bears thinking about.

The problem that causes the inner conflict is the limited treatment options available if you find that you are carrying the gene. It is not like carrying the gene for breast cancer, where there are surgical options. A surgical option is not available in this case. You can’t remove your brain.

As well, the drug trials have been spectacularly unsuccessful. The brain is complex and the current trials have not been able to have a meaningful effect on disease progression. This puts doctors in a difficult position when it comes to diagnosis.

When people ask me the question, I ask them: “Will it make a difference to you?”

I think the answer to this question will help decide what is the right choice – to know or not to know.

If you knew you were carrying the gene, would you feel like you are living with a ticking time bomb inside of you? Would it push you towards despair and depression? Would you just give up, feeling like the end is inevitable? Or would it motivate you to change your behavior?

Your reaction to this information is important.

So what would I do?

While the decision to find out whether you are a carrier is a personal decision, I think that you should live as if you do have the gene. I don’t need a genetic test to motivate me. But maybe you do. Whatever you decide, you should make the changes in your life that will help reduce dementia risk.

We know that lifestyle choices can have a huge impact on whether you increase or decrease your dementia risk. Much of this is common sense advice. But while those choices can improve overall health, it may be difficult to find the motivation to change behaviors.

The medical profession in America has taken a step forward in information disclosure around dementia once it is known.

The American Psychiatric Association and the American Academy of Neurology recently updated the measures for high-quality dementia care. In a move that they called “especially impor