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Early-onset Alzheimer’s needs understanding, coping skills, not fear

Early-onset Alzheimer’s needs understanding, coping skills, not fear

For Tracy Capullo, the fade began in 2013. “I couldn’t remember things,” said Capullo, 52, who lives
Early-onset Alzheimer’s  needs understanding, coping skills, not fear
Tracy and Rick Capullo have decided to tackle her early-onset Alzheimer's disease together, one day at at a time.
Photographer: Marc Schultz

For Tracy Capullo, the fade began in 2013.

“I couldn’t remember things,” said Capullo, 52, who lives in Rotterdam. “I went to one of my best friends and said, ‘Donna, I don’t know how to turn the computer on.’ ”

At the time, Capullo was a veteran nurse at Schenectady’s Ellis Hospital. Other things began to happen that would change her career and her life. “I would go into a patient’s room and they would ask me for something,” Capullo said. “I’d leave and I wouldn’t come back because I couldn’t remember.”

Then, things happened she would never forget. Doctor visits led to evaluations and to a diagnosis: Capullo had early-onset Alzheimer’s disease and had to retire from nursing.

The disease was in the news earlier this summer, with the death of Pat Summitt. The longtime head basketball coach of the University of Tennessee Lady Vols, Summitt announced she had early-onset—when symptoms of dementia occur before age 65— in August 2011. She completed the 2011-12 season in a reduced role before retiring at age 59. She died on June 28 at a senior living facility in Knoxville. She was 64.

Capullo and her husband, Rick, are fighting the disease together. They have received help from the Northeastern New York chapter of the Alzheimer’s Association and the Coalition of New York State Alzheimer’s Association Chapters, both based in Guilderland.

Some people — who have experienced Alzheimer’s through older relatives — might be surprised that the disease can make such early appearances.

Not common occurrence

Dr. David Hart, an associate professor of neurology at Albany Medical College who is in practice with the Albany Med Community Neurology/The Neurology Group, said early-onset cases are not that common.

“Most of the people who have onset in their 40s and 50s are people who have a dominantly inherited Alzheimer’s disease,” Hart said, “which means there’s a single gene abnormality that their family has, that’s passed down from generation to generation and if you get that gene you’re going to develop the disease at a similar age to your parents and your grandparents.”

In those people, Alzheimer’s is hereditary.

“And that makes up about one percent of Alzheimer’s disease worldwide, so that’s a small fragment of it,” Hart said. “But it’s an important fragment.”

He added that the overwhelming majority of Alzheimer’s cases are not determined by the presence of a single gene. Doctors don’t know exactly what triggers Alzheimer’s in the other 99 percent of patients, but there is a link to beta-amyloid proteins that are found in the brain.

“The main point is, in the Alzheimer’s brain the beta-amyloid starts to accumulate and when it accumulates that starts causing dysfunction of the nerve cells,” Hart said.

Pathologic hallmark

“The amyloid builds up into these clumps of proteins called amyloid plaques, that was one of the pathologic hallmarks when Dr. [Aloysius] Alzheimer presented his paper 100 years or so ago and his name was given to the disease, because of the finding in the brains of affected patients of these clumps of protein in the cellular matrix.”

The abnormal build-up is the problem. “Whatever causes that to occur, whether it’s that the brain is making too much or the brain isn’t getting rid of it as easily and as efficiently, there’s too much of it there,” Hart said.

The Capullos are coping as best they can. Tracy said Rick will tell her something and she’ll often forget it minutes later. She can still drive, but just for short distances. And her trips do not include any routes with roundabouts, or any high-speed roads like the Adirondack Northway. The car GPS system, with automatic

instructions for the route back home, has become an insurance policy.

Ignoring little things

“I’ve learned to leave all the little things alone,” said Rick, 59, who has also retired from Ellis. “If she asks me something six times in five minutes, I just keep answering her. I don’t say, ‘You just asked me!’ I just blow it off. If you’re going to argue about the little things . . .”

Rick does all the cooking, but that’s not a big change from days past. “That’s always been the case because she either worked from 3 until 11 or 7 until 7, so I’ve been cooking since day one,” he said.

“She’ll do the dishes and our dishes are starting to dwindle, sometimes she’s not stacking them right,” Rick added. “There goes another one. You’ve got to kind of make fun of things sometimes. If you don’t, you don’t want to be arguing all the time.”

There are notes on the dryer and washer for settings that should be used, and notes on the family calendar for things to be remembered. Tracy doesn’t read books anymore because she can’t remember previous chapters. She still enjoys days at the couple’s camp at Lake Pleasant in Speculator, but will see old friends and not remember their names.

The Capullos’ Golden Labrador, Molly, has become a great friend. She’s always around Tracy.

“She’ll come up and sit on my bed until I go to sleep and then she’ll go down on the floor,” Tracy said. “She won’t leave me.”

Worrisome actions

Hart said people will wonder if they are developing an early form of Alzheimer’s, just because they keep doing simple things — like leaving the television set for the kitchen, making a sandwich, returning to the living room and wondering where they put the TV remote. Of course, it’s been left in the kitchen next to the mayonnaise.

“There are early warnings, but that sort of thing is usually because you’re sitting down to watch the game but you’re also thinking about the story you have to write tomorrow and the source you have to get in touch with,” Hart said. “People have a lot of things on their mind and they get distracted and aren’t giving their full attention. So that’s most commonly the cause of that sort of thing.

“When people start putting the remote in the freezer and frozen food out on the counter or into the car, putting things in bizarre places . . . people start having not just trouble coming up with somebody’s name, which is a very common thing and a normal part of aging, but when people start having trouble remembering who people are, that is a warning sign,” he said.

Other warning signs — people can no longer figure out their finances. They start getting lost when they drive places.

Helpful services

Help is available. Elizabeth Smith-Boivin, executive director and chief executive officer for the Northeastern New York chapter of the Alzheimer’s Association, said care consultations are among the most important services provided.

“Basically, it sort of lays the groundwork for what one can expect and what one needs to do now as they’re diagnosed with this disease and they’re overwhelmed,” she said.

The learning process includes information about Alzheimer’s and support groups that can help both people afflicted and their families. “Mostly, we find that people who are diagnosed and their families really just need to learn about the disease because there’s a good deal of misinformation, there’s a good deal of misunderstanding,” Smith-Boivin said. “They’re going to be on the journey for a very long time.”

Coping strategies help. That can mean group activities.

“We use the arts a lot, we do painting,” Smith-Boivin said. “We have a group called the Joy Tones, which is a singing group composed of people with Alzheimer’s disease and their care partners. That group has grown from a group of eight to a group of about 25 people. They rehearse every week and put on concerts in the Capital Region. We try to keep peopleof connected to their peers because they support each other a great deal.”

New ways of thinking are also part of the plan. Smith-Boivin tells people who have been diagnosed with Alzheimer’s at any age to stop using monthly and weekly calendars. Take days one at a time at home, and on the calendar — jot down things that must be done just on that one day.

“When people embrace compensatory skills like that, they function better longer, they’re less dependent on their care partners, which is always a great concern to people who are 55 or 60 years old,” Smith-Boivin added. “They don’t want to be dependent on others, they want to continue to be independent and high-functioning.”

Managing disease

Jane Ginsburg, executive director of the Coalition of New York State Alzheimer’s Association Chapters, said the disease can be managed.

“The best way to manage a disease is to understand it and to understand how it can affect the body, the person and the family and the circle around people as it progresses,” Ginsburg said.

Fear doesn’t have to move into the house, just because Alzheimer’s has.

“It’s not something to be scared of,” she said. “It’s something they have to take ownership of.”

Treatments for the disease and research for a cure continue.

Hart said exercise — always the prescription for a healthy body — also benefits the brain.

“Over the last couple of years, there have been a number of studies published showing that physical exercise improves memory and attention,” Hart said.

“In animal trials, physical exercise has been shown to increase the amount of new nerve cells being formed in the memory center of the brain. That part, to my knowledge, has not been replicated in humans yet . . . it’s a very hard thing to prove the occurrence of individual nerve cells in the living brain. So people who exercise more and mid-life exercise levels in particular, have a strong correlation with a healthier brain later in life.”

Hart said there are several clinical trials at his neurology center that are currently enrolling patients with mild cognitive impairment — memory loss but otherwise people who can function normally — a condition that often leads to Alzheimer’s.

“The Alzheimer’s Association also has a great resource to help connect patients with studies nationwide, ‘Trial Match,’ ” Hart said. “As I said, right now we don’t have any approved medicines to slow the disease, so participating in these clinical trials is the only way for patients to get access to potential treatments.”

Time will help

The doctor believes healthier diets — and time — will also help.

“It’s not going to be long before we have an FDA-approved medicine that has an actual effect on the course of the disease,” Hart said. “Medicine can help symptoms but not affect the underlying cause of the disease.

“I think it’s not going to be very long before we have something that does,” he added. “I think that’s a great source of optimism.”

Both Tracy and Rick are taking life day by day. They know it’s serious, but there are still smiles around the house. “When he does something wrong, I tell him it’s his fault, because I have Alzheimer’s,” Tracy said.

There’s also hope in the household.

“I’m more optimistic with the more research that they do,” Tracy said. “Obviously, something’s going to happen faster than if they weren’t doing research.”

Reach Gazette reporter Jeff Wilkin at 395-3124 or at [email protected] or @jeffwilkin1 on Twitter. His blog is at www.dailygazette.com/weblogs/wilkin.

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