
Do I know Iām at risk for developing dementia? You bet.
My father died of Alzheimerās disease at age 72; my sister was felled by frontotemporal dementia at 58.
And thatās not all: Two maternal uncles had Alzheimerās, and my maternal grandfather may have had vascular dementia. (In his generation, it was called senility.)
So what happens when I misplace a pair of eyeglasses or canāt remember the name of a movie I saw a week ago? āNow comes my turn with dementia,ā I think.
Then I talk myself down from that emotional cliff.
Am I alone in this? Hardly. Many people, like me, whoāve watched this cruel illness destroy a family member, dread the prospect that they, too, might become demented.

The lack of a cure or effective treatments only adds to the anxiety. Just this week, that another study trying to stop Alzheimerās in people at extremely high genetic risk had failed.
How do we cope as we face our fears and peer into our future?
Andrea Kline, whose mother, as well as her motherās sister and uncle, had Alzheimerās disease, just turned 71 and lives in Boynton Beach, Florida. Sheās a retired registered nurse who teaches yoga to seniors at community centers and assisted-living facilities.
āI worry about dementia incessantly. Every little thing that goes wrong, Iām convinced itās the beginning,ā she told me.
Because Kline has had multiple family members with Alzheimerās, sheās more likely to have a genetic vulnerability than someone with a single occurrence in their family. But that doesnāt mean this condition lies in her future. A risk is just that: Itās not a guarantee.
The age of onset is also important. People with close relatives struck by dementia early ā before age 65 ā are more likely to be susceptible genetically.
Kline was the primary caregiver for her mother, Charlotte Kline, who received an Alzheimerās diagnosis in 1999 and passed away in 2007 at age 80. āI try to eat very healthy. I exercise. I have an advance directive, and Iāve discussed what I want [in the way of care] with my son,ā she said.
āLately, Iāve been thinking I should probably get a test for APOE4 [a gene variant that can raise the risk of developing Alzheimerās], although Iām not really sure if it would help,ā Kline added. āMaybe it would add some intensity to my planning for the future.ā
I spoke to half a dozen experts for this column. None was in favor of genetic testing, except in unusual circumstances.
āHaving the APOE4 allele [gene variant] does not mean youāll get Alzheimerās disease. Plenty of people with Alzheimerās donāt have the allele,ā said Mark Mapstone, a professor of neurology at the University of California-Irvine. āAnd conversely, plenty of people with the allele never develop Alzheimerās.ā
Tamar Gefen, an assistant professor of psychiatry and behavioral sciences at Northwestern Universityās Feinberg School of Medicine, strongly suggests having an in-depth discussion with a genetic counselor if youāre considering a test.
āBefore you say āI have to know,ā really understand what youāre dealing with, how your life might be affected, and what these tests can and cannot tell you,ā she advised.
Karen Larsen, 55, is a social worker in the Boston area. Her father, George Larsen, was diagnosed with vascular dementia and Alzheimerās at age 84 and died within a year in 2014.
Larsen is firm: She doesnāt want to investigate her risk of having memory or thinking problems.
āIāve already planned for the future. I have a health care proxy and a living will and long-term care insurance. Iāve assigned powers of attorney, and Iāve saved my money,ā she said. āEating a healthy diet, getting exercise, remaining socially engaged ā I already do all that, and I plan to as long as I can.ā
āWhat would I do if I learned some negative from a test ā sit around and worry?ā Larsen said.
Currently, the gold standard in cognitive testing consists of a comprehensive neuropsychological exam. Among the domains examined over three to four hours: memory, attention, language, intellectual functioning, problem-solving, visual-spatial orientation, perception and more.
Brain scans are another diagnostic tool. CT and MRI scans can show whether parts of the brain have structural abnormalities or arenāt functioning optimally. PET scans (not covered by Medicare) can demonstrate the buildup of amyloid proteins ā a marker of Alzheimerās. Also, spinal taps can show whether amyloid and tau proteins are present in cerebrospinal fluid.
A note of caution: While amyloid and tau proteins in the brain are a signature characteristic of Alzheimerās, not all people with these proteins develop cognitive impairment.
Several experts recommend that people concerned about their Alzheimerās risk get a baseline set of neuropsychological tests, followed by repeat tests if and when they start experiencing worrisome symptoms.
āWhen it comes to thinking and memory, everyone is different,ā said Frederick Schmitt, a neurology professor at the University of Kentucky. Having baseline results is āvery helpfulā and āallows us to more carefully measure whether, in fact, significant changes have occurredā over time, he said.

Nora Super, senior director of the Milken Institute Center for the Future of Aging, watched her father, Bill Super, and all three of his siblings succumb to Alzheimerās disease over the course of several years ā falling, she said, ālike a row of dominoes.ā
One of her sisters was tested for the APOE4 genetic variant; results were negative. This is no guarantee of a dementia-free future, however, since hundreds of genes are implicated in Alzheimerās, Lewy body dementia, frontotemporal dementia and vascular dementia.
Rather than get genetic or neuropsychological tests, Super has focused on learning as much as she can about how to protect her brain. At the top of the list: managing her depression as well as stress. Both have been .
Also, Super exercises routinely and eats a -style diet, rich in vegetables, berries, whole grains, nuts, fish and beans. She is learning French (a form of cognitive stimulation), meditates regularly and is socially and intellectually active.
According to a , physical inactivity, hearing loss, depression, obesity, hypertension, smoking, social isolation, diabetes and low education levels raise the risk of dementia. All of these factors are modifiable.
What if Super started having memory problems? āI fear I would get really depressed,ā she admitted. āAlzheimerās is such a horrible disease: To see what people you love go through, especially in the early stages, when theyāre aware of whatās happening but canāt do anything about it, is excruciating. Iām not sure I want to go through that.ā
Gefen of Northwestern said she tells patients that āif [cognitive testing] is something thatās going to stress you out, then donāt do it.ā

Nigel Smith, 49, had a change of heart after caring for his mother, Nancy Smith, 81, whoās in hospice care in the Boston area with Alzheimerās. When he brought his mother in for a neuropsychological exam in early 2017 and she received a diagnosis of moderate Alzheimerās, she was furious. At that point, Nancy was still living in the familyās large home in Brookline, Massachusetts, which she refused to leave.
Eventually, after his mother ended up in the hospital, Smith was given legal authority over her affairs and he moved her to a memory care unit.
āNow, sheās deteriorated to the point where she has about 5% of her previous verbal skills,ā Nigel said. āShe smiles but she doesnāt recognize me.ā
Does he want to know if something like this might lie in his future?
A couple of years ago, Smith said he was too afraid of Alzheimerās to contemplate this question. Now heās determined to know as much as possible, ānot so much because Iām curious but so I can help prepare myself and my family. I see the burden of what Iām doing for my mother, and I want to do everything I can to ease that burden for them.ā
Kim Hall, 54, of Plymouth, Minnesota, feels a similar need for a plan. Her mother, Kathleen Peterson, 89, a registered nurse for over 50 years, was diagnosed with vascular dementia five years ago. Today, she resides in assisted living and doesnāt recognize most of her large family, including dozens of nieces and nephews who grew up with Hall.
Hall knows her mother had medical issues that may have harmed her brain: a traumatic brain injury as a young adult, uncontrolled high blood pressure for many years, several operations with general anesthesia and an addiction to prescription painkillers. āI donāt share these, and that may work in my favor,ā she said.
Still, Hall is concerned. āI guess I want to know if Iām at risk for dementia and if there is anything I can do to slow it down,ā she said. āI donāt want what happened to my mother to happen to me.ā Probably, Hall speculated, sheāll arrange to take a neuropsychological exam at some point.
Several years ago, when I was grieving my sisterās death from frontotemporal dementia, my doctor suggested that a baseline exam of this sort might be a good idea.
I knew then I wouldnāt take him up on the offer. If and when my time with dementia comes, Iāll have to deal with it. Until then, Iād rather not know.
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