Alzheimer’s: Would You Want to Know?

December 24, 2025

Submitted By Nancy R. Poland
Graces Message

When my dad had advanced Lewy body dementia, he lived in a nursing home for 16 months. At visits, I would ask myself, “What can I do to make this visit enjoyable for Dad and me?” I tried different ideas, some successful, other times he appeared oblivious. Since then, in my studies of caregiving resources, I have come across more ideas.

Deciding whether you would want to learn if you have dementia or not is a huge question that many people ponder. Below will give you some ideas to think about.

There are two ways of looking at this question.

If there is a possibility that you could have a genetic predisposition for Alzheimer’s disease or another dementia, would you want to know?
Would you want to go through a series of tests that confirm you have Alzheimer’s or another dementia?

While I often write and speak about other types of dementia, this article focuses on Alzheimer’s disease. It is the most significant cause of dementia, and there is more research available for this disease.

Now I know.

In 2016, my husband and I each spit in a tube and sent it to a genetic testing company. I learned that I have one copy of the APOE ε4 variant, which, they told me, increased my risk of getting Alzheimer’s by about 5%. What I know I cannot unknow.

Science has advanced since 2016. Testing is more thorough, statistics have improved, and greater accuracy is more achievable. Perhaps I should be retested?

Despite how accurate that test might be, I know dementia runs in my family. On the other hand, having two APOE ε4 variants increases the risk more than having just one, so maybe I avoided a bullet there.

Would you want to know?

There are advantages to knowing we may have a genetic disposition for a disease such as Alzheimer’s. It may motivate us to live a healthier lifestyle and to stay on top of our medical care. It should prompt us to ensure our legal paperwork is in order: a durable power of attorney, a health care directive including selecting health care agents, and a current will. Another benefit is future planning – just in case.

There may be disadvantages to knowing; any sign of forgetfulness or confusion can cause anxiety. People have concerns about insurance or workplace discrimination. I think the main reason people do not want to know is fear of the unknown – Alzheimer’s is a heartbreaking disease.

Consider whether these disadvantages are greater than the value of knowing what the future may hold. Remember that having this gene does not mean you will develop Alzheimer’s or another dementia. There are many factors involved, including lifestyle and environmental influences, among others. (A small minority of people do have what they call deterministic Alzheimer’s genes, but those people would likely know if this ran in the family.)

You may want to seek advice from a genetic counselor or your physician before taking any tests, or when you have the results.

When Signs of Mental Decline are Apparent

If you or a loved one is concerned about the possibility of cognitive impairment, should testing occur? I say yes, for the same reasons mentioned above. In addition, physical ailments such as thyroid conditions or urinary tract infections are treatable and can cause similar symptoms. Knowledgeable professionals must do a diagnosis.

Research Findings

Years in the making, promising findings in dementia research are now emerging. These findings can help us make informed decisions. For more information, click on the links.

Of particular interest are biomarker* tests that can detect Alzheimer’s-related proteins, such as Amyloid-βNS and Phosphorylated tau. These biomarker tests may show Alzheimer’s changes years before symptoms. They are not universally available, but access is expanding. See how the National Institutes of Health reports on this topic: Biomarker Research.
Lifestyle – In Finland, a major lifestyle-intervention study (exercise, nutrition, mental stimulation, health care) found that older adults at risk for cognitive decline improved in overall brain function when practicing positive lifestyle methods. These lifestyle enhancements are good advice for anyone!
This article in Diagnostic World summarizes findings from the 2025 Alzheimer’s Conference regarding new diagnoses and treatments for Alzheimer’s disease. While it is technical, those of us with a non-scientific background can still glean interesting points that give us hope.

I am an advocate of knowing – after all, there is truth to the old saying “knowledge is power.” Knowing what could happen, or what is happening, gives us greater independence in planning our future. It should encourage us to involve family members or other caregivers. And it should enable us to live every day to the full, and appreciate all we have in this big, beautiful world.

I recently participated in a new book just published this year, “Caregivers Advocate: A Complete Guide to Support and Resources 2.” This, along with the first Caregivers Advocate book, was led by Debbie DeMoss Compton and published by Brave Healers Productions, is a must-have for caregivers. Visit my website https://gracesmessage.com for caregiver resources, including links to my bookstore.

*Biomarkers – Any measurable biological sign, such as blood tests, scans, blood pressure, and chemical or metabolic measurements.

Nancy R. Poland
Graces Message

Nancy R. Poland shares her passion for helping caregivers, live with grace and hope. Her website for a wealth of information for caregivers. It provides tailored resources, highlights of her books, hope for those who have experienced loss, valuable insights regarding dementia, improving senior’s lives, health care news, and more. Nancy also shares a personal page on loss that has resources for processing grief.