If You’re Genetically Predisposed to Dementia. . .

Q. I have been watching the documentary Limitless, with Chris Hemsworth, on Disney+. It’s been fascinating to see what he is doing to stay young and stave off disease.

I haven’t seen all of the episodes but read somewhere that Hemsworth found out during filming that he is eight to 10 times more likely to get Alzheimer’s disease because he is carrying two copies of the APOE4 gene variant — from both his mother’s side and his father’s side— and that this has prompted him to take a hiatus from acting and focus on his family, health, and well-being.

Many relatives on both sides of my family had Alzheimer’s, including my mother. Although I’m doing what I can to stave off neurodegenerative diseases, similar to Hemsworth, I likely have a genetic predisposition to it. I do know I have the APOE4 gene variant on my mother’s side, and my father died from Alzheimer’s before we did any genetic testing, so there is likelihood that he had the gene, as well. Given the probability that I will have Alzheimer’s one day, I want to do something to help further Alzheimer’s research. I’m seriously considering donating my brain to researchers after I die, whether or not I ever get the disease. How does one go about doing this? Are there legal documents I can put in place to ensure that this happens? Thanks so much for your help!

A. As you mentioned, Chris Hemsworth, 39, who is best known for his portrayal of Thor in the Marvel franchise, has discovered he is at a higher-than-average risk for Alzheimer’s disease. While filming Limitless, the Australian actor revealed that he carries two copies of the APOE4 gene variant.

The APOE gene helps carry cholesterol through the bloodstream. Nearly 30 years ago, scientists learned that APOE influences a person’s chances of developing Alzheimer’s and heart disease. Everyone carries this gene, but there are a few variants. If you have APOE2 — the least common variant — it reduces the risk of Alzheimer’s. APOE3, the most common genetic variant, doesn’t seem to influence Alzheimer’s risk much and is generally considered neutral. Then there is APOE4, the type that Hemsworth has.

About one in four people in the general population have an APOE4 gene variant. One copy of the APOE4 gene makes someone two to three times more likely to get Alzheimer’s disease than the general population. About 2 percent to 3 percent of the population, similar to Hemsworth, carry two copies of the variant, making them up to eight to 10 times more likely to get Alzheimer’s. As a carrier of two copies of APOE4, Hemsworth is also at a 45 percent increased risk of heart disease.

By focusing on his health, Hemsworth may be able to control other environmental risk factors known to cause diseases, such as high blood pressure, smoking, sleep, and other lifestyle factors. Often, what is good for your heart is good for a healthy aging brain, and he is wise to take time to take care of himself.

Hemsworth revealed that the greatest fear he had when he heard about his genetic disposition was that he “might eventually forget his family and the life he built with his wife and kids.” He is currently watching his own grandfather experiencing advanced Alzheimer’s symptoms. He noted that he isn’t quitting acting altogether but that he plans to go on an extended break and spend time with his three daughters and spouse, Elsa Pataky.

Should You Get Tested for the APOE4 Gene?

While there are several tests available for Alzheimer’s disease, geneticists often caution against testing for the APOE genetic variant, as Chris Hemsworth did. Current guidelines suggest that carrying the gene variant can’t automatically determine who will or will not develop Alzheimer’s disease. It just increases your risk. Instead, it could be helpful to chat about your family and medical history with your doctor to help you determine if other genetic tests might be appropriate. And, of course, if you are predisposed to Alzheimer’s, and even if you’re not, it’s always wise to plan in advance.

One Way You Can Help with Alzheimer’s Research

Similar to Chris Hemsworth, Lauren Wilson found out that she is genetically susceptible to dementia (but it was vascular dementia in her case rather than Alzheimer’s disease). Thirteen women on both her mother’s and father’s side died from the disease. She watched her mother experience it and become very angry, forgetful, and confused.

Her mom’s vascular dementia developed after a series of small strokes. Her mother had no history of smoking or diabetes (which can heighten your risk for strokes) and had been a lifelong athlete. Lauren’s mother lived to be 89. She spent the last five years of her life silent and immobile, which was quite difficult for Lauren to watch.

How Lauren Decided to Donate Her Brain

One day, Lauren was in her car listening to an NPR special about the desperate need for brains for research in all areas of study, including Alzheimer’s disease and other forms of dementia, Parkinson’s, autism, and concussion. She found out that brain banks have been established around the country and learned about the Brain Donor Project. She was also surprised to learn that checking the “organ donor” box on your driver’s license covers about 25 different organs but generally does not make your brain available for donation or scientific research when you die.

Lauren instantly knew that she wanted to donate her brain — diseased or not — in the hope that it could help evolve understanding about dementia. She filled out an application on the Brain Donor Project website and sent it in. She soon received an acceptance letter and an all-hours phone number for her family to call upon her death. The whole procedure is provided at no cost to her family. Once her brain is extracted, her body will be returned to her family for burial or cremation.

According to Lauren, “If there is anything after this life, my brain, like all of my other organs, won’t be needed to experience it.” She adds, “I hope that other people, with or without a history of brain disease, will also consider brain donation. It won’t hurt anybody, but it could, potentially, help many by enriching science’s understanding of this most powerful and mysterious part of us.”

Thinking about organ donation? Read more about it in my article on the subject.

Document Your Decision in Your Advance Medical Directive

An Advance Medical Directive authorizes another person to make decisions with respect to your medical care in the event that you are physically or mentally unable to do so. Whether or not you feel strongly about organ donation, it is important to make your intentions known in an Advance Medical Directive if you want your wishes to be honored.

• Our 4 Needs Advance Medical Directive® includes an After-Death Directive that addresses organ donation in detail, and allows you to stipulate which organs you would want donated (for example, some people want to donate their brain or another organ, but not skin and bones, which are actually two of the most desired types of donor tissue). You can even name intended recipients if perhaps you have family members with kidney disease or some other organ disease who might be in need of a transplant.
• Our 4 Needs Advance Medical Directive® also enables you to set forth your preferences with regard to funeral arrangements and disposition of remains.
• In your 4 Needs Advance Medical Directive®, you also appoint an agent (and typically one or more alternates) and give that person the power to consent to medical and health care decisions on your behalf. This person can decide whether to withhold or withdraw a specific medical treatment or course of treatment when you are incapable of making or communicating an informed decision yourself.
• Our 4 Needs Advance Medical Directive® also contains a proprietary Long-Term Care Directive® that allows you to address numerous issues that arise if and when long-term care is needed and you’re unable to communicate your wishes.
• You can also indicate your wishes concerning the use of artificial or extraordinary measures to prolong your life in the event of a terminal illness or injury.

If you have not done Incapacity Planning (including our 4 Needs Advance Medical Directive® and Financial Power of Attorney), Estate Planning, or Long-Term Care Planning, or if you have a loved one who is nearing the need for long-term care or already receiving long-term care, please contact us as soon as possible. In addition, if your family is facing a diagnosis of Alzheimer’s disease or any other type of dementia, please call us to set up an appointment!

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