By Judith Graham FEBRUARY 21,
2020
Do I
know I’m at risk for developing dementia? You bet.
My
father died of Alzheimer’s disease at age 72; my sister was felled by
frontotemporal dementia at 58.
And
that’s not all: Two maternal uncles had Alzheimer’s, 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’t remember the name of a
movie I saw a week ago? “Now comes my turn with dementia,” I think.
Then I
talk myself down from that emotional cliff.
Am I
alone in this? Hardly. Many people, like me, who’ve 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, news emerged that
another study trying to stop Alzheimer’s 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’s sister and uncle, had Alzheimer’s
disease, just turned 71 and lives in Boynton Beach, Florida. She’s a retired
registered nurse who teaches yoga to seniors at community centers and
assisted-living facilities.
“I
worry about dementia incessantly. Every little thing that goes wrong, I’m
convinced it’s the beginning,” she told me.
Because
Kline has had multiple family members with Alzheimer’s, she’s more likely to
have a genetic vulnerability than someone with a single occurrence in their
family. But that doesn’t mean this condition lies in her future. A risk is just
that: It’s not a guarantee.
The age
of onset is also important. People with close relatives struck by dementia
early — before age 65 — are more likely to be susceptible genetically.
Kline
was the primary caregiver for her mother, Charlotte Kline, who received an
Alzheimer’s diagnosis in 1999 and passed away in 2007 at age 80. “I try to eat
very healthy. I exercise. I have an advance directive, and I’ve discussed what I
want [in the way of care] with my son,” she said.
“Lately,
I’ve been thinking I should probably get a test for APOE4 [a gene variant that
can raise the risk of developing Alzheimer’s], although I’m not really sure if
it would help,” Kline added. “Maybe it would add some intensity to my planning
for the future.”
I spoke
to half a dozen experts for this column. None was in favor of genetic testing,
except in unusual circumstances.
“Having
the APOE4 allele [gene variant] does not mean you’ll get Alzheimer’s disease.
Plenty of people with Alzheimer’s don’t have the allele,” said Mark Mapstone, a
professor of neurology at the University of California-Irvine. “And conversely,
plenty of people with the allele never develop Alzheimer’s.”
Tamar
Gefen, an assistant professor of psychiatry and behavioral sciences at Northwestern
University’s Feinberg School of Medicine, strongly suggests having an in-depth
discussion with a genetic counselor if you’re considering a test.
“Before
you say ‘I have to know,’ really understand what you’re dealing with, how your
life might be affected, and what these tests can and cannot tell you,” she
advised.
Karen
Larsen, 55, is a social worker in the Boston area. Her father, George Larsen,
was diagnosed with vascular dementia and Alzheimer’s at age 84 and died within
a year in 2014.
Larsen
is firm: She doesn’t want to investigate her risk of having memory or thinking
problems.
“I’ve
already planned for the future. I have a health care proxy and a living will
and long-term care insurance. I’ve assigned powers of attorney, and I’ve saved
my money,” she said. “Eating a healthy diet, getting exercise, remaining
socially engaged — I already do all that, and I plan to as long as I can.”
“What
would I do if I learned some negative from a test — sit around and worry?”
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’t functioning optimally. PET
scans (not covered by Medicare) can demonstrate the buildup of amyloid proteins
— a marker of Alzheimer’s. 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’s, not all people with these proteins develop
cognitive impairment.
Several
experts recommend that people concerned about their Alzheimer’s risk get a
baseline set of neuropsychological tests, followed by repeat tests if and when
they start experiencing worrisome symptoms.
“When
it comes to thinking and memory, everyone is different,” said Frederick
Schmitt, a neurology professor at the University of Kentucky. Having baseline
results is “very helpful” and “allows us to more carefully measure whether, in
fact, significant changes have occurred” 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
Alzheimer’s disease over the course of several years — falling, she said, “like
a row of dominoes.”
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’s, 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 linked to dementia.
Also,
Super exercises routinely and eats a MIND-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 growing body of research,
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? “I fear I would get really depressed,”
she admitted. “Alzheimer’s is such a horrible disease: To see what people you
love go through, especially in the early stages, when they’re aware of what’s
happening but can’t do anything about it, is excruciating. I’m not sure I want
to go through that.”
Gefen
of Northwestern said she tells patients that “if [cognitive testing] is
something that’s going to stress you out, then don’t do it.”
Nigel
Smith, 49, had a change of heart after caring for his mother, Nancy Smith, 81,
who’s in hospice care in the Boston area with Alzheimer’s. When he brought his
mother in for a neuropsychological exam in early 2017 and she received a
diagnosis of moderate Alzheimer’s, she was furious. At that point, Nancy was
still living in the family’s 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.
“Now,
she’s deteriorated to the point where she has about 5% of her previous verbal
skills,” Nigel said. “She smiles but she doesn’t recognize me.”
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’s to contemplate
this question. Now he’s determined to know as much as possible, “not so much
because I’m curious but so I can help prepare myself and my family. I see the
burden of what I’m doing for my mother, and I want to do everything I can to
ease that burden for them.”
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’t 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. “I don’t share these, and that may work in my favor,” she said.
Still,
Hall is concerned. “I guess I want to know if I’m at risk for dementia and if
there is anything I can do to slow it down,” she said. “I don’t want what
happened to my mother to happen to me.” Probably, Hall speculated, she’ll
arrange to take a neuropsychological exam at some point.
Several
years ago, when I was grieving my sister’s death from frontotemporal dementia,
my doctor suggested that a baseline exam of this sort might be a good idea.
I knew
then I wouldn’t take him up on the offer. If and when my time with dementia
comes, I’ll have to deal with it. Until then, I’d rather not know.
Judith
Graham: khn.navigatingaging@gmail.com, @judith_graham
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