When people discover what I do for a living, they often tell me about a family member who is living with or has died from Alzheimer’s. Then comes the question at the top of their mind: “Will I get it?”
The answer depends on so many factors that can’t be known in casual conversation. But I understand why they are anxious about it. I think we do that with a lot of conditions our parents have or had---my mom died of a heart attack, I am carrying more pounds than I should, so I worry. But with Alzheimer’s, that worry is stronger because almost everyone has heard that there is some familial or genetic basis for it to run in families.
Here’s what we are pretty sure is true. Family history is a risk factor for getting Alzheimer’s disease. Research has shown that anyone who has a parent, sister, or child with Alzheimer’s is more likely to develop the disease. We know that the risk increases if more than one family member has Alzheimer’s.
According to the Alzheimer’s Association, which does a great job of explaining the genetics of the disease (link below), both risk genes--those that increase the likelihood but do not guarantee it will happen--and deterministic genes--those that directly cause the disease and guarantee that anyone with them will develop the disease--are present in Alzheimer’s.
Let’s explore the risk genes first. Although there are several genes that have been found to increase the risk of Alzheimer’s, APOE-e4 was the first one identified and is still believed to be the one with the most impact. We all inherit APOE genes (e2,e3, and e4) from each parent Those who inherit one copy of APOE-e4 have an increased risk of developing Alzheimer’s. According to Alz.org:
Those who inherit two copies have an even higher risk, but not a certainty. In addition to raising risk, APOE-e4 may tend to make symptoms appear at a younger age than usual. Scientists estimate that APOE-e4 is implicated in about 20 percent to 25 percent of Alzheimer's cases.
Regarding deterministic genes that directly cause Alzheimer’s in families, most people don’t realize how unusual they are. Again, according to the Alzheimer’s Association:
Scientists have found rare genes that cause Alzheimer's in only a few hundred extended families worldwide. These genes, which are estimated to account for less than 5 percent of Alzheimer's cases, cause familial early-onset forms in which symptoms usually develop between a person's early 40s and mid-50s.
Experts now agree that Alzheimer’s is like a lot of other chronic conditions, most often developing as a result of many things we do to ourselves. Fortunately, unlike our genes, many of those factors are controllable. They include lifestyle, environment and to some extent co-morbidities such as heart disease and high blood pressure. Let’s spend more time focused on eating a healthy diet, exercising, avoid smoking, and controlling drinking, and less time worrying about what we can’t control. It’s a crucial step in fighting Alzheimer’s as individuals and society as a whole.
Juliet Holt Klinger, Senior Director of Dementia Care for Brookdale Senior Living is a gerontologist specializing in person-centered programs for Alzheimer’s disease and related dementias. As a trainer and program designer for close to 30 years, she has developed and operationalized programs for national companies representing both skilled nursing and assisted living levels of dementia care.
Juliet holds a Bachelor’s degree in Social Work and an Aging Studies Certificate from the University of Iowa and a Master’s Degree in Gerontology from the University of Northern Colorado.
In her role for Brookdale, Juliet currently designs and innovates care pathways and programming for Brookdale’s 560+ dementia care communities. Brookdale’s dementia care solutions span from its newest early-stage dementia care communities to skilled nursing and assisted living levels of care.