黑料吃瓜网

Skip to content
Navigating Aging

Stalked By The Fear That Dementia Is Stalking You

(iStock/Getty Images Plus)

Do I know I鈥檓 at risk for developing dementia? You bet.

My father died of Alzheimer鈥檚 disease at age 72; my sister was felled by frontotemporal dementia at 58.

And that鈥檚 not all: Two maternal uncles had Alzheimer鈥檚, 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 can鈥檛 remember the name of a movie I saw a week ago? 鈥淣ow comes my turn with dementia,鈥 I think.

Then I talk myself down from that emotional cliff.

Am I alone in this? Hardly. Many people, like me, who鈥檝e watched this cruel illness destroy a family member, dread the prospect that they, too, might become demented.

Judith Graham (left) with her sister, Deborah.(Courtesy of Judith Graham)

The lack of a cure or effective treatments only adds to the anxiety. Just this week, that another study trying to stop Alzheimer鈥檚 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 mother鈥檚 sister and uncle, had Alzheimer鈥檚 disease, just turned 71 and lives in Boynton Beach, Florida. She鈥檚 a retired registered nurse who teaches yoga to seniors at community centers and assisted-living facilities.

鈥淚 worry about dementia incessantly. Every little thing that goes wrong, I鈥檓 convinced it鈥檚 the beginning,鈥 she told me.

Because Kline has had multiple family members with Alzheimer鈥檚, she鈥檚 more likely to have a genetic vulnerability than someone with a single occurrence in their family. But that doesn鈥檛 mean this condition lies in her future. A risk is just that: It鈥檚 not a guarantee.

The age of onset is also important. People with close relatives struck by dementia early 鈥 before age 65 鈥 are more likely to be susceptible genetically.

Kline was the primary caregiver for her mother, Charlotte Kline, who received an Alzheimer鈥檚 diagnosis in 1999 and passed away in 2007 at age 80. 鈥淚 try to eat very healthy. I exercise. I have an advance directive, and I鈥檝e discussed what I want [in the way of care] with my son,鈥 she said.

鈥淟ately, I鈥檝e been thinking I should probably get a test for APOE4 [a gene variant that can raise the risk of developing Alzheimer鈥檚], although I鈥檓 not really sure if it would help,鈥 Kline added. 鈥淢aybe it would add some intensity to my planning for the future.鈥

I spoke to half a dozen experts for this column. None was in favor of genetic testing, except in unusual circumstances.

鈥淗aving the APOE4 allele [gene variant] does not mean you鈥檒l get Alzheimer鈥檚 disease. Plenty of people with Alzheimer鈥檚 don鈥檛 have the allele,鈥 said Mark Mapstone, a professor of neurology at the University of California-Irvine. 鈥淎nd conversely, plenty of people with the allele never develop Alzheimer鈥檚.鈥

Tamar Gefen, an assistant professor of psychiatry and behavioral sciences at Northwestern University鈥檚 Feinberg School of Medicine, strongly suggests having an in-depth discussion with a genetic counselor if you鈥檙e considering a test.

鈥淏efore you say 鈥業 have to know,鈥 really understand what you鈥檙e dealing with, how your life might be affected, and what these tests can and cannot tell you,鈥 she advised.

Karen Larsen, 55, is a social worker in the Boston area. Her father, George Larsen, was diagnosed with vascular dementia and Alzheimer鈥檚 at age 84 and died within a year in 2014.

Larsen is firm: She doesn鈥檛 want to investigate her risk of having memory or thinking problems.

鈥淚鈥檝e already planned for the future. I have a health care proxy and a living will and long-term care insurance. I鈥檝e assigned powers of attorney, and I鈥檝e saved my money,鈥 she said. 鈥淓ating a healthy diet, getting exercise, remaining socially engaged 鈥 I already do all that, and I plan to as long as I can.鈥

鈥淲hat would I do if I learned some negative from a test 鈥 sit around and worry?鈥 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 aren鈥檛 functioning optimally. PET scans (not covered by Medicare) can demonstrate the buildup of amyloid proteins 鈥 a marker of Alzheimer鈥檚. 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 Alzheimer鈥檚, not all people with these proteins develop cognitive impairment.

Several experts recommend that people concerned about their Alzheimer鈥檚 risk get a baseline set of neuropsychological tests, followed by repeat tests if and when they start experiencing worrisome symptoms.

鈥淲hen it comes to thinking and memory, everyone is different,鈥 said Frederick Schmitt, a neurology professor at the University of Kentucky. Having baseline results is 鈥渧ery helpful鈥 and 鈥渁llows us to more carefully measure whether, in fact, significant changes have occurred鈥 over time, he said.

Nora Super holds nieces Kylie and Lian Ascher on the couch beside Nora鈥檚 father, Bill Super, and her aunt Trudy Super.(Courtesy of Nora Super)

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 Alzheimer鈥檚 disease over the course of several years 鈥 falling, she said, 鈥渓ike a row of dominoes.鈥

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 Alzheimer鈥檚, 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? 鈥淚 fear I would get really depressed,鈥 she admitted. 鈥淎lzheimer鈥檚 is such a horrible disease: To see what people you love go through, especially in the early stages, when they鈥檙e aware of what鈥檚 happening but can鈥檛 do anything about it, is excruciating. I鈥檓 not sure I want to go through that.鈥

Gefen of Northwestern said she tells patients that 鈥渋f [cognitive testing] is something that鈥檚 going to stress you out, then don鈥檛 do it.鈥

Nancy Smith celebrates her 81st birthday with sons Nigel (right) and Tim Smith.(Courtesy of Nigel Smith)

Nigel Smith, 49, had a change of heart after caring for his mother, Nancy Smith, 81, who鈥檚 in hospice care in the Boston area with Alzheimer鈥檚. When he brought his mother in for a neuropsychological exam in early 2017 and she received a diagnosis of moderate Alzheimer鈥檚, she was furious. At that point, Nancy was still living in the family鈥檚 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.

鈥淣ow, she鈥檚 deteriorated to the point where she has about 5% of her previous verbal skills,鈥 Nigel said. 鈥淪he smiles but she doesn鈥檛 recognize me.鈥

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 Alzheimer鈥檚 to contemplate this question. Now he鈥檚 determined to know as much as possible, 鈥渘ot so much because I鈥檓 curious but so I can help prepare myself and my family. I see the burden of what I鈥檓 doing for my mother, and I want to do everything I can to ease that burden for them.鈥

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 doesn鈥檛 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. 鈥淚 don鈥檛 share these, and that may work in my favor,鈥 she said.

Still, Hall is concerned. 鈥淚 guess I want to know if I鈥檓 at risk for dementia and if there is anything I can do to slow it down,鈥 she said. 鈥淚 don鈥檛 want what happened to my mother to happen to me.鈥 Probably, Hall speculated, she鈥檒l arrange to take a neuropsychological exam at some point.

Several years ago, when I was grieving my sister鈥檚 death from frontotemporal dementia, my doctor suggested that a baseline exam of this sort might be a good idea.

I knew then I wouldn鈥檛 take him up on the offer. If and when my time with dementia comes, I鈥檒l have to deal with it. Until then, I鈥檇 rather not know.

Related Topics

Aging Navigating Aging