Alzheimer’s disease is a life-threatening illness that affects people all over the world. Early disease detection with genetic tests continue to be developed to address a growing need. With Alzheimer’s, one can experience memory, thinking, and behaviour impairments when symptoms appear. As the disease worsens, the person may struggle with mobility and completing routine tasks.1,2
Overall, early detection has more promising outcomes. There are currently no treatments for Alzheimer’s, but clinical trials are underway. In those with known risk factors, trials aim to stop the disease before symptoms appear.2 Research is also looking to validate new drugs that stop or slow the course of the disease progression.2
Clues that can reveal our fate
With age, a person’s likelihood of developing Alzheimer’s increases. In addition, certain processes in our bodies can heighten this likelihood. Currently, biomarker and genetic tests are used to identify risk factors associated with Alzheimer’s disease.
Biomarker tests detect two proteins called amyloid and tau. With Alzheimer’s, there’s an abnormal presence of these proteins in the brain. Having these proteins in the blood or brain can mean a risk of developing the disease.3 Unfortunately, it’s often not until a person dies that identification of these proteins confirms the diagnosis.
Genetic tests reveal information about the architecture of our genes. For example, the APOE gene and its APOE4 allele is associated with a risk of developing Alzheimer’s.2 Chris Hemsworth, known to many as “Thor,” recently took a genetic test and learned that he inherited the APOE4 gene from both of his parents.4 The actor’s bravery to share this personal information is helping the general population gain awareness and compassion surrounding the disease.
It’s important to note that having biological risk factors for Alzheimer’s doesn’t guarantee its development. If anything, knowing your risk factors with disease detection tests could be beneficial if early treatment is sought. Therefore, getting a biomarker or genetic test is not a death sentence but a driver to take action.
To disclose or not to disclose
Knowing whether you have risk factors for Alzheimer’s disease can help you plan the next steps. But what do you with this information?
There are advantages and disadvantages to pre and early disease detection and sharing the test results. Disclosing this information, to a healthcare professional or loved one is probably beneficial for receiving support.
Unfortunately, Alzheimer’s comes with a stigma, and sharing test result information with others can also be harmful. There can be a change in social status when people don’t understand the test results or the disease. Additional challenges when people don’t understand the tests or the disease can be holding a job or getting a new one, finding a place to live, and getting insurance.2
Getting to the bottom of it
Understanding the reasons why people refrain from sharing their test results will be paramount to providing them with the support they need. Also, a better understanding can help decision makers amend laws to protect people’s rights surrounding discrimination. This will be especially important once a treatment becomes available and routine screening becomes the norm.2
Chris Hemsworth took a break to figure out how to minimize his risk and make the best of his situation, but also decided to share his results to promote awareness and education.4 What would you do?
1. Lane CA, Hardy J, Schott JM. Alzheimer’s disease. Eur J Neurol. Jan 2018;25(1):59-70. doi:10.1111/ene.13439
2. Largent EA, Stites SD, Harkins K, Karlawish J. ‘That would be dreadful’: The ethical, legal, and social challenges of sharing your Alzheimer’s disease biomarker and genetic testing results with others. J Law Biosci. Jan-Jun 2021;8(1):lsab004. doi:10.1093/jlb/lsab004
3. Blennow K, Zetterberg H. Biomarkers for Alzheimer’s disease: current status and prospects for the future. J Intern Med. Dec 2018;284(6):643-663. doi:10.1111/joim.12816
4. McIntosh, S. Chris Hemsworth: Alzheimer’s risk prompts actor to take acting break. BBC News. Nov 21, 2022. Accessed Dec 4, 2022. https://www.bbc.com/news/entertainment-arts-63668310