Mind Matters

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Alzheimer’s Association, Aloha Chapter Director of Development Steve Tam estimates that there are 28,000 people living with the disease; a startling fact made all the more eye-opening when he numbers the amount of unpaid family caregivers taking care of them: 66,000.

“There’s approaching 100,000 people that are in some way affected by the disease, and it’s going to grow more and more, primarily because our population is aging and Alzheimer’s disease is a disease which is more prevalent with age,” he says.

“At 65 years and older … 1 in 10 people will come down with Alzheimer’s disease,” he adds. “People 85 or over, 1 out of 3 people will have Alzheimer’s disease.”

As such, Alzheimer’s Association has made it its mission to “eliminate Alzheimer’s through the advancement of research; and provide and enhance care and support for those affected,” to hear Tam tell it. The organization also makes it a point to encourage the importance of brain health in an effort to overall reduce the risk of dementia. (The difference between dementia and Alzheimer’s, Tam explains, is that dementia is the overarching disease that Alzheimer’s falls under, which accounts for about 70-75 percent of all cases.)

To accomplish this, the organization—which works on all islands—puts on fundraisers throughout the year. Its most popular event is the Walk to End Alzheimer’s, along with The Longest Day, a flexible campaign that Tam describes as a “do-it-yourself fundraiser,” with participants choosing their own ways to generate support for the nonprofit.

Perhaps more importantly, though, Alzheimer’s Association serves as a resource for the community, and particularly for those with family members who are affected by the disease. Support groups available throughout the state, for example, give caregivers the opportunity to connect with others to share their feelings and experience.

In addition, Alzheimer’s Association offers classes and seminars that give attendees warnings signs to look out for, communication strategies and more, entirely free of charge. There also is a 24-hour hotline that people may call to speak with trained professionals (800-272-3900).

Beyond all the obvious ways to help, Tam says that the greatest contribution the community can make to assist the organization in achieving its goals is to simply know that Alzheimer’s Association is available as a resource—and then spread the word.

“Let other people know so that they are aware that they are not alone in the fight,” says Tam. “Oftentimes, someone with Alzheimer’s and family members caring for them are doing it alone.

And with the amount of unpaid family caregivers in the state only growing, it will require the community at large to lend a helping hand.

“With about 66,000 family caregivers in Hawai‘i, I would classify them as the largest working group,” says Tam. “They are unpaid and unnoticed. Many of them are working 24/7 at this job. It’s a full-time job and more so, and it’s something that’s done with no vacations.

“It’s something that we need the help of everyone in the community because it’s going to affect everyone,” he adds. “It’s something that’s one of the most expensive diseases in America. The greatest cost is really not financial, I think, but it’s personal—it steals someone’s memory and it steals someone’s independence and it steals their dignity.”

Tam, who has been a volunteer with Alzheimer’s Association for about nine years and in his current position for a year and a half, has firsthand knowledge of dealing with the disease. His father was diagnosed with Alzheimer’s and died because of it, and he still has two uncles battling with it.

His is a case familiar to many of the staff and volunteers who dedicate their time to furthering the efforts of Alzheimer’s Association.

“Most of the people that work at the association, and also our core of volunteers that we have, the reason that we do it is because we’ve been affected by the disease,” he says.

Ultimately, the joy that Tam has found in the work he is doing boils down to making sure families have the support and resources they need to care for their loved ones.

“Oftentimes, when families are affected by the disease, what happens is that they feel powerless on what to do because Alzheimer’s, there is no scientifically known cause of it or cure yet,” he says. “What the association is doing is looking to do that research, to find that cause and a cure, but unless people are researchers and scientists, they often- times feel powerless.

“Alzheimer’s Association is a way that I, me personally, can do something about the disease,” he continues. “I can bring more awareness and … show other people that they’re not alone in it. It’s a great way to make a difference in the community to help out so many other family members and the community at large.” alz.org/hawaii

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