To Tell or Not?

The mere mention of Alzheimer’s disease can strike fear in the minds of many people over 60. It does in me. I immediately conjure a picture of someone — maybe myself — mute and staring aimlessly while someone is trying to talk to me.

Call me a hypochondriac if you will, but the numbers don’t lie. More than 5 million people have the disease (that we know about). That number is expected to rise to 16 million by mid century. Deaths from the disease have increased by about 68 percent in the last decade.

The fact that the disease strikes older people is not a news bulletin. However, many people are unaware that younger-onset Alzheimer’s (aka early-onset Alzheimer’s) may affect individuals in their thirties and forties. This fact raised numerous issues for me, and what follows is a discussion of the ethics involved, not the medicine. However, an explosion of research on the subject is occurring currently, and the future is bound to bring much new information.

The Alzheimer’s Association notes that some doctors may not diagnose the disease in younger people regardless of what are obvious symptoms after the diagnosis is made. There is no simple or universally established method of testing for the disease, and most doctors are simply not attuned to look for the symptoms in relatively youthful patients. All too often, they simply attribute the signs of the disease to stress or another illness. Receiving a correct diagnosis, if ever, of early onset can be a “long and frustrating process.”

Currently, only two methods are used to reliably predict risk for Alzheimer’s — one involves MRI brain imaging and the other a spinal tap. Both are intrusive and expensive, according to a recent article in Georgetown Magazine, and they are general used only in clinical trials not in your local hospital.

But what if doctors had available to them simple and inexpensive blood tests that could accurately predict whether younger people would develop the dreaded disease at some later point in life? Would a 30-year-old take the test?

You might ask, “Why would anyone that young want to know that information now?” Adding to the dilemma is the knowledge that while there may be some measures you can take to lessen the impact of the disease now, advanced stages of the disease have no cure, at least not yet. As one bioethicist noted, “From the ways things are shaping up, the test is going to be available far ahead of the treatment.”

If you’re thinking, “What good would a positive diagnosis do for me?” you’re not alone. Susan Kudla Finn, president and CEO of the Alzheimer’s Association National Capital Area Chapter stated, “[M] ost people will choose not to have a predictive blood test until there are disease modifying treatments.” And Dr. G. Kevin Donovan, director of Georgetown’s Center for Clinical Bioethics noted, “ … there will be no treatments developed until people predicted to be at risk volunteer to participate in clinical studies that will develop those treatments.”

Kudla Finn added about those who do volunteer: “I admire greatly those who say ‘I want to be part of the solution,’ which we think is very courageous.”

Let’s say you decide to find out if you have the disease. You take the predictive test when it becomes available. But then the roof falls in — your test comes back positive. Alzheimer’s is definitely in your future — maybe 10 years, 20 years, or even 30 years away — and it may possibly be in your children’s future. But now you have to deal with numerous ethical issues sooner rather than later.

First, do you tell your loved ones right away? “Of course,” you say. Then you think, well maybe not. Perhaps, if you do, from now on your family may view everything you say and do through the prism of the disease. Why tell them now if the test indicates you may not be affected for decades?

For your adult children and others who share your genetic make up, I believe that you have an ethical duty to tell them immediately. They can then decide for themselves if they want to take the test that will predict their future.

What if you are about to enter into a long-term relationship (in earlier years known as marriage)? Does your partner have a right to know about your medical condition? Absolutely. Again, you must level with your partner. He or she has a right to know.

These two examples are the easy situations to resolve. Issues related to medical care, employment, and legal matters are much harder to decide.

Do you tell your health-care provider, knowing full well that the health insurance company may refuse to cover you or limit your coverage? What about if you’re applying for long-term care insurance, and the questionnaire specially asks if you have ever been tested for “early onset” Alzheimer’s? Do you lie?

While I am long past the age of younger-onset Alzheimer’s, I am not sure how I would face this issue. I certainly would not want to face tens of thousands of dollars of medical bills without insurance. Would I lie?

What about your employer or future employer? Your tests have indicated that you will have Alzheimer’s, but any symptoms may be years or decades away. Do you tell your employer at the risk of not getting a job or losing one? Unless my doctors gave me an indication that my ability, say, to be a pilot was affected by my younger-onset Alzheimer’s tendency, I would probably not tell my employer.

Unfortunately, for some of you, the questions raised here will not be just theoretical. If the scientific researchers are right, a number of you will face these difficult questions at some point in your life. Currently, one in three seniors who die have a diagnosis of Alzheimer’s or another type of dementia, says the Alzheimer’s Association.

It will take courage to make the right ethical decisions when faced with a diagnosis of younger-onset Alzheimer’s.

November is National Alzheimer’s Disease Awareness Month. Numerous activities in our community this month focus on Alzheimer’s, and many of them are posted at the Central California Chapter’s Facebook page.