MAKEUP ARTIST TRIES DRAWING
Why Heather’s Birthday Present to Herself Is an Alzheimer’s Test
Her mother was diagnosed with early-onset Alzheimer’s. Now, a daughter plans to get screened herself.
By Sarah Tan
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Heather Van Lin knew something was wrong the day her mother, Barbara Nevitt, got lost in their hometown. Barbara, a real estate broker for 25 years, knew the town of Perry, Iowa, like the back of her hand. She was 57.
“I probably was the first one to notice something was going on,” Van Lin says. She lived about an hour away but called her mother regularly, which is how she started to realize that her mother was saying less and struggling to follow details.
“I tried to ask my dad if everything was alright,” she recalls. She told him, “’She just seems so short lately,’ and he said, ‘No, she’s fine, she’s just stressed and busy at work.’”
Even Barbara’s doctor wrote off her symptoms as old age — at 57. Shocked, the family sought a second opinion, and Barbara eventually received a diagnosis of early-onset Alzheimer’s disease. Also known as younger-onset Alzheimer’s, early-onset has the same disease progression and symptoms as regular Alzheimer’s but affects people under the age of 65.
“With the majority of people with younger-onset, we don’t know why they develop memory changes in thinking and reasoning at a younger age,” says Heather Snyder, PhD, director of Medical and Scientific Operations at the Alzheimer’s Association.
More than 5 million Americans live with Alzheimer’s today, and almost two-thirds of them are women, according to the Alzheimer’s Association. The relatively low number of Americans with early-onset — about 200,000 people — is part of what makes it an especially shocking diagnosis; who expects to hear they’ve got Alzheimer’s when they haven’t even reached retirement?
“One of the challenges we see in younger-onset is that people don’t necessarily think about Alzheimer’s and dementia in their 40s and 50s,” Dr. Snyder says. She recommends visiting a physician if you experience mental changes or find it difficult to perform mental tasks you used to do easily.
‘We Had to Learn to be Calmer’
Following the diagnosis, Van Lin’s mother remained physically healthy by biking and playing volleyball. She even continued to go into the real estate office she owned with her husband, Robert Nevitt, for about a year after her diagnosis. But some of her other functions deteriorated rapidly.
“Her conversation skills and speaking skills diminished quite quickly,” Van Lin says. “It was really hard for my family because we were always talking over each other and we had to learn to be calmer and treat her like she was normal, even if she was out of it at the time.”
By the time she was 59, Barbara was unable to speak much at all and needed assistance dressing and bathing. Her decline was particularly difficult for Robert; the Nevitts had been high school sweethearts.
“It was hard because there are not a lot of support groups out there for early-onset for younger spouses,” Van Lin says. “[The people at support groups] are all older and in a different place in life. My dad still worked full time.”
On top of working full time, Robert was Barbara’s primary caregiver. He refused to send her to a nursing home or Alzheimer’s care facility and cared for her at home until about nine months before she passed away in 2013 of a stroke. She was 63.
“We gave [our dad] breaks as much as possible, but he just loved her and he did not treat her any differently,” Van Lin says.
There is no cure nor prevention for Alzheimer’s, so caregivers and patients only have the options of palliative care and medications that mask or manage symptoms. Van Lin’s mother took Namenda, a drug often given to help manage moderate-to-severe Alzheimer’s cases. She also took antidepressants and anti-hallucinogens because her deterioration occasionally made her see things.
Despite her decline, Barbara never lost her ability to recognize family members.
“She didn’t lose her true memory of any of the family,” Van Lin says. “You could see it in her eyes she knew who we were.”
The day before she died, Barbara happily interacted with family members, giving everyone hugs and kisses.
“When she passed, we all sighed a big sigh of relief, because she never wanted to be a burden,” Van Lin says. In a way, the family was relieved that Barbara didn’t go through the final stages of Alzheimer’s, when patients become bedridden. “While we were devastated, we also were very relieved that we could remember our mom as she was.”
Genetic Testing and Early Detection
Barbara had two genetic markers of Alzheimer’s, the APOE-e3 and e4 genes, for which she was tested after her diagnosis. Van Lin, now 39, says that she plans to be tested for these markers once she turns 40 this November.
Snyder says that for a small percentage of those with early-onset Alzheimer’s, there are genetic indicators that can put a person at risk for early onset, but having these genes doesn’t necessarily mean a person is guaranteed to get Alzheimer’s.
Van Lin says she also plans to receive regular screenings for Alzheimer’s in order to detect it early. Though there is no cure, early detection can help slow the disease’s progress. Van Lin says that in her mother’s case, Barbara had been showing signs of the disease a year before her formal diagnosis but her primary care doctor didn’t catch it.
“My biggest concern is our primary care population. Are they getting enough education to test their patients first?” Van Lin asked. “If she had gotten an actual diagnosis from her primary care physician, it would have been a year earlier.
For now, Van Lin is focusing on keeping her mind and body active by exercising and doing word games and brain puzzles. In addition to her job in software, she is an advocate for the Alzheimer’s Association.
“It’s a big passion of mine to advocate and volunteer to build awareness and fundraise,” she says, adding that the more awareness around the disease, the more people can take steps to minimize the disease’s effect.
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