At
school pickup, Janet Perez always looks for the neon orange backpack that makes
her 6-year-old son, Jayden, so easy to spot. But on a recent spring afternoon
in Perris,
California, she could not find him. Her first response was primal:
Someone had kidnapped him. Then she tried to remember what he had been wearing
and realized she was not sure if she had dropped him off that morning. A
familiar dread washed over her: Was it happening? Was her forgetfulness an
early sign that she had her mother’s illness, Alzheimer’s disease?
اضافة اعلان
Ten long minutes
after she arrived at school, Jayden appeared. He had been in the bathroom.
Perez then remembered that her sister had brought him to school that morning;
she had been watching their mother.
Even though a
nurse practitioner has since attributed her memory lapses to stress, the fear
of forgetting looms large over Perez. “What if this is my destiny, and this is
what’s going to happen to me?” she asked on a recent morning as she sat beside
her mother, Rita Perez, with whom she has lived since 2019. Janet Perez began
caring for her after the 74-year-old widow started leaving her stove burners on
and grew so paranoid that she was barricading her bedroom door with a chair.
Since then, the family has watched Rita Perez, a woman who once owned a beauty
salon, steadily lose the ability to do her own hair or brush her own teeth. In
a wheelchair much of the time, she no longer recognizes Janet Perez, or her
four other children.
Janet Perez, 35,
would be an extremely young person to have Alzheimer’s — in most cases, symptoms
appear after age 65 — and no one else in her large Mexican American family has
the condition. Still, she knows the impact of dementia, an umbrella term for
many illnesses that cause the deterioration of brain function, in her
community. It afflicts Hispanic older adults nearly twice as often as their
white counterparts, according to a recent study in
JAMA, the influential
medical journal.
With her
mother’s decline, and her own memory lapses, Perez often lies awake at night
circling around what is, for her, the darkest thought of all: What if, one day
soon, she forgets who Jayden is?
In the US,
Alzheimer’s disease affects 6.5 million adults over 65 years old; by 2050, that
figure is projected to nearly double, according to the Alzheimer’s Association,
the leading advocacy organization for those with the disease.
But thanks to
expanded awareness of the illness, the most common form of dementia, it
regularly ranks in consumer polls as one of the most feared diseases. Among
relatives who have watched the
disease’s progression in a loved one, the
perceived threat can be even greater, research has shown. In some cases, they
became hypervigilant about monitoring their own memories, each forgotten name
or lost set of keys seemingly a sign of something more serious.
Shannon
Spindler, a 47-year-old library assistant whose father has the disease, which
killed his own father, started to cry recently when she misplaced a book. “Oh,
dear God, is it coming for me?” wondered the Springfield, Missouri, resident.
Mark Applegate,
now 51, notes growing closer to 65 — the age when his mother was diagnosed — every birthday. She is now in hospice,
sleeping most of the time. While Applegate, an IT director from Bolivar,
Missouri, is not thinking about Alzheimer’s constantly, “it’s in the back of my
mind that it’s already in the process for me,” he said.
For Amber Barber
of
Lebanon, Oregon, it’s the image of her 77-year-old father on his deathbed
last year that haunts her, as does her fear that she will be next. “I don’t
have memory problems, but the scary thing for me was watching how fast he
went,” said Barber, 46, a program management director at a software consulting
company. She added, “I don’t want to have my kids watch me starve to death.”
Certainly not
everyone with a family history of Alzheimer’s lives in fear. But for those who
do, the worry can be overwhelming. Cristiane Passarela, a licensed mental
health counselor at NYC Cognitive Therapy, has seen clients hyperventilate with
the worry that they have the same disease as a relative. “The worst is when
they come to us and they cannot function,” she said.
When people
report suffering from worsening memory, and tests do not reveal deterioration,
the complaints are collectively referred to as subjective cognitive decline.
These self-reported symptoms can be early signs of Alzheimer’s disease, but
long-term follow-up suggests that, a lot of the time, they are not.
Still, some fear
can be beneficial. Concern has driven many family members to get assessed. It
has also inspired lifestyle changes, like becoming more physically and
cognitively active, that have been associated with reduced risk for decline.
“You get the
people who reframe their fear into a positive by doing lifestyle activities
that may be a benefit to them,” said Dr David Wolk, professor of neurology at
the
University of Pennsylvania and director of the Penn Alzheimer’s Disease
Research Center.
But fear can
also make it harder for currently healthy people to enjoy their lives right
now. How do you live well despite what may — or may not — be to come?
Do not overestimate your own risk
People who have at least one close relative with Alzheimer’s have a
higher risk of dying from the condition, according to a study that examined
residents of Utah using a genealogy database. Still, the majority of people
with a family history of
Alzheimer’s will not develop the disease.
Genetics play a
more significant role for those with early-onset familial Alzheimer’s, also
referred to as dominantly inherited Alzheimer’s. This form of the disease
affects only 1 percent to 2 percent of the general population, and generally
appears before age 65. Children with a parent who carries the gene defect
responsible for it have a 50 percent chance of inheriting the gene defect,
which will lead to a high chance of getting this form of Alzheimer’s.
However, the
greatest risk factor for the most common form of the disease, late-onset
Alzheimer’s, is not family history; it’s simply getting older. Above age 85, it
affects a third of adults. Many doctors caution against genetic testing, which
is not the most accurate way to predict or confirm the diagnosis of late-onset
Alzheimer’s.
People with a
family history of Alzheimer’s can benefit by reminding themselves, “I may be at
slightly increased risk, but it doesn’t mean I am necessarily going to get
this,” said Dr Kristine Yaffe, professor of psychiatry, neurology,
epidemiology, and biostatistics at the University of California, San Francisco.
“I may get other things, I may live to be 100 and may be fine.”
For those who
notice persistent memory lapses, the next step may be an evaluation. “You
should only go to see the doctor if you have the feeling that this is a
sustained change,” said Dr Frank Jessen, a researcher with the German Center
for Neurodegenerative Diseases in Germany, who studies subjective cognitive
decline. Consider checking in with your provider “only if it’s a sustained
feeling that your memory is not well functioning anymore over several months
and maybe your family also notices it,” Jessen said.
Turn fear into possible protection
Perez first realized the toll her mother’s illness had taken on her
three years ago, when she barely recognized herself in a photo. Exhausted by
the idea of losing her mother, she had bags under her eyes and had grown more
sedentary, contributing to her borderline high blood pressure. She had been so
focused on the well-being of her mother and son, she had neglected her own. “I
was going to let this ruin me,” she said.
Instead, she
decided to quit drinking and began to exercise regularly.
Addressing
so-called “modifiable risk factors” like high blood pressure, low physical
activity and frequent alcohol consumption can possibly prevent or delay up to
40 percent of dementia cases, according to a 2020 report by the Lancet
Commission on dementia, prevention, and care, which identified and ranked 12
factors associated with lowering one’s risk for cognitive decline. Correcting
any hearing loss and quitting smoking are also high on the list.
Notably, there
is not much evidence that vitamins or dietary supplements help improve
cognition or prevent dementia; data on diet is limited but suggests that a
heart-healthy diet, like the Mediterranean diet, can be protective.
Experts place
special emphasis on staying cognitively active throughout life: learning to
play an instrument, traveling to new places, or simply doing stimulating work —
“engaging your brain in any way,” said Dr Gill Livingston, lead author of the
Lancet Commission report and a professor of psychiatry of older people at
University College London.
Engage in the life
you have now
When dealing with any recurring fear, “Part of it is accepting a
certain powerlessness and lack of control exists,” said Dr Timothy Scarella,
instructor in psychiatry at Harvard Medical School and Beth Israel Deaconess
Medical Center. “That is particularly true with Alzheimer’s: You might get this
despite your best efforts.” Worrying about it in the meantime can take away
from a person’s enjoyment of their healthy years.
As is true for
many other kinds of worry, psychologists recommend a basic mindfulness
practice. Many activities qualify: meditation, prayer, movement like yoga or
qigong, or even hiking or walking — anything that encourages slowing down and
observing the present moment, without judgment or shame.
When a fear
causes significant distress or interferes with daily life, professional
guidance may be needed. When Passarela, the mental health counselor, sees
clients who are convinced they are experiencing Alzheimer’s symptoms, she challenges
that thought: What evidence do you have that the thought is true? What evidence
do you have that it’s not true?
When Perez is anxious,
she prays the rosary, and a calm settles over her. Recently, she realized that
alongside the pain that has accompanied her mother’s illness, there have been
unexpected gifts. Whatever happens in the future, she’s healthier now, thanks
to lifestyle changes that her mother — and her mom’s illness — have inspired,
Perez said. “Even if she’s not mentally here, she’s still helping me.”
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