Local chapter of Alzheimer’s Association provides education, advocacy and support for sufferers of a devastating disease.
This October marked the 30th wedding anniversary for Frank and Stella McCarthy, a major milestone for any couple. To say the Pennsauken residents celebrated, however, would be misleading. There was no romantic dinner at a fancy restaurant, no night out for a show. That’s because only one of them even knew the day had special meaning.
Stella McCarthy has been living with Alzheimer’s disease since her diagnosis in January 2006. Though only now approaching her 65th birthday, Stella’s condition has recently taken a turn for the worse, and Frank isn’t sure his wife even knows him anymore.
“I think she does. She’ll stare at [me], but she can’t talk at all,” McCarthy says. “She’ll just start staring every once in a while, but as far as true recognition, I don’t know. It’s hard to say. People seem to think, and I do too, that sometimes she’s listening when you talk to her. But is she really listening, or is she hearing babble? I don’t know.
“Over the past year and a half, it’s really gotten bad with her. We always tried to get her out on Saturdays and Sundays and take a ride somewhere. But it’s gotten to the point where all she’s doing is basically sleeping. The only time we take her out is to go to the hospital or the doctor’s.”
Tim Kaufman, about a decade younger than Stella McCarthy, still leads a pretty active life. He continues to drive his car, even on his own. He makes frequent trips to Shop Rite, and if you saw him walking down the street, you’d never guess there was anything amiss.
But his life has changed drastically since he started having trouble focusing at work about four years ago. He eventually lost his $80,000-a-year job as a compliance officer for an Internet company, and was later diagnosed with Frontotemporal dementia (FTD) in 2012 at age 54.
Kaufman can no longer work; he has trouble making decisions or following through on everyday tasks; he often loses track of time; and he sometimes will be in the middle of a conversation with his long-time partner, Ron Bongart, and forget what they are talking about. “This whole thing has forever changed my life,” Kaufman says. “I’m no longer able to work because of my disability. It has affected me financially and emotionally, as well as what it has done to my partner. He remembers what I once was and he sees the changes. I don’t realize how much I’ve changed. So it’s been even more devastating for him, because he sees me every day and he sees my struggle.
“He supports me in every avenue of this, whether I realize it or not. That’s what’s been really crazy about this, that I don’t even realize how many times he actually helps me in a day. As far as I’m concerned, I feel like I have my act together a lot of the time and I think I know what I’m doing. But I’m still asking him for his help and his opinion on things, and a lot of times I’m oblivious to that.”
Kaufman and Bongart, as well as the McCarthys, are just two of the many area couples learning how to live with Alzheimer’s or dementia. According to the Alzheimer’s Association Delaware Valley chapter—the local branch of a national organization—Alzheimer’s or a related disorder affect approximately 85,000 South Jerseyans. Nationally, the number is more than 5 million, and Alzheimer’s is the sixth-leading cause of death in the United States.
That’s why the Alzheimer’s Association is determined to help people suffering from the disease and their families through education, advocacy and support. While November is National Alzheimer’s Disease Awareness Month, the professionals and volunteers who make up the association fight the disease all year long.
“It’s such a big epidemic, and we’re always looking to let people know more about it, and also what we can provide to help them,” says Linda Coppinger, executive director of the South Jersey regional office in Marlton, part of the Delaware Valley chapter.
The first step for anyone in the area seeking services for themselves or a loved one is to call the association’s 24/7 helpline. Although nationally based, the helpline also has local facilitators who work the phones Monday through Friday and can direct people to programs they might be interested in.
And there are plenty of programs available in South Jersey, including early-stage support groups for Alzheimer’s sufferers and their loved ones; support groups for spouses only or adult children of those with the disease; and a REC Center that meets twice a week for three hours in the Marlton office. “That’s for individuals who are newly diagnosed to come for socialization, art and culture activities,” Coppinger says. “They’re connecting with peers and they’re seeing that they’re not facing the disease on their own, and their caregivers are also getting a bit of a respite during that time.”
The McCarthys joined an early-stage group soon after Stella’s diagnosis and stayed for several years, until the disease progressed. Frank McCarthy believes it was beneficial for both of them. “The group setting was really good,” he says. “To hear what some of the people were going through and talking about what I was going through, it was really [helpful]. I hate to say it, but it was really something I looked forward to. It really helped to prepare you for some of the problems that would be coming up.”
Kaufman was a participant in a similar early-stage group after Bongart encouraged him to pursue opportunities with the Alzheimer’s Association. Now he spends a lot of his time volunteering, both with the local and national organizations.
Last year, he shared his story at the Walk to End Alzheimer’s in Atlantic City, and this month he’s doing the same at Citizens Bank Park for the Philadelphia walk. He calls newly diagnosed individuals through the peer-to-peer outreach program, and is part of the National Early-Stage Advisory Group, which helps the organization develop relevant and helpful services. He also took part in a video project that will be used for training volunteers.
“Being involved with the Alzheimer’s Association has given me an activity to be involved in,” Kaufman says. “It lets me use my mind to be creative. … I’m excited about being involved. The group that I work with at the Delaware Valley chapter has been great; they’re supportive and anything that you ask them to do or you want to get involved with, they’re 100 percent behind you.”
In addition to the many support avenues available, the local chapter of the Alzheimer’s Association is also heavily involved in raising funds for research into the disease and raising awareness. The fall is walk season—six are held in the Delaware Valley, including two in South Jersey in Atlantic City and the New Jersey Motorsports Park in Millville. This May, they will sponsor a golf outing at Trump National in Pine Hill, and sometime next fall the chapter’s annual Wine, Women & Shoes event will take place in South Jersey. Coppinger is especially excited about that night, since it helps shed a light on the fact that women make up two-thirds of the Americans suffering from Alzheimer’s.
“With the connection of women being disproportionately affected, we’ve made a commitment that we need to really reach out to women, and this is one way to do it,” she says. “It’s just a fun, fabulous event, and people flock to it. It’s a fashion show; it’s a wine tasting; we have vendors who sell high-end merchandise; there’s a silent and live auction; there’s vintner’s dinners. There’s a lot of things going on, and people just love it.”
In addition to providing services and raising funds and awareness, the other primary objective of the Alzheimer’s Association is its advocacy efforts. Coppinger’s office, along with the Greater New Jersey chapter of the association, is currently helping to create a comprehensive state plan on how to deal with issues of Alzheimer’s and dementia.
The New Jersey Alzheimer’s Disease Study Commission will have several public input sessions in November, with the first scheduled for Nov. 13 at Richard Stockton College.
“It’s for caregivers, people with the disease and professionals to come and give us their thoughts and concerns,” Coppinger says. “There will be a survey that will be circulated for the same purpose. One of the things from the national office all the way down to the local level is we work with elected officials to get them to support our public policy priorities, which are getting funding for research and providing services. This state plan would be geared to developing those services and making sure all the needs are being met, everything from training of professionals to providing support for caregivers. We’re looking at all the issues, and that’s why we’re having these input sessions.”
Frank McCarthy previously served as an ambassador for the Alzheimer’s Association to former U.S. Rep. Rob Andrews, meeting about once a month with the congressman to let him know about events and programs within the local chapter and seeking information about developments in Congress.
But McCarthy believes the disease isn’t given enough attention from politicians. He cited a situation earlier this year when popular actor Seth Rogen spoke before Congress about Alzheimer’s in support of his mother-in-law, who suffers from the disease.
“There’s so much testing going on out there, but I don’t think there’s enough money going to it,” he says. “With breast cancer, you’ve got major people in the United States who are on board with curing it. But with Alzheimer’s, I don’t think people realize what it is or what it can do. A perfect example was when Seth Rogen went to Congress and spoke in front of a panel, and there were three congressmen there. If you do something for breast cancer, the whole panel is packed with congressmen and senators. I know he was really upset about that, and rightly so.
“There’s more money or connections going to other diseases than there is to Alzheimer’s. It’s a shame, but that’s the truth.”
Kaufman and his partner, Bongart, think change is necessary within the medical community as well. They had to see numerous doctors and go through many different tests over a lengthy time period before dementia was even considered.
“It took us almost two years to get the final diagnosis, and that was a fight,” Bongart says. “That was not an easy road. We saw so many doctors. We’d go to one doctor and they’d tell us one thing, and then we’d go to another doctor and they’d tell us something completely different. Who do you believe and put your faith in? When we finally went through the major testing, it was astronomically expensive. Is insurance going to cover it? We didn’t know. So even getting that whole process going was something. There were a couple times when I almost had to jack up the doctors because they weren’t in any rush to conclude anything.”
Kaufman says that many doctors don’t want to even consider Alzheimer’s or dementia until someone is in their 70s or 80s, but he and Stella McCarthy are perfect examples that it can happen much sooner.
“The one thing I’ve learned through my interactions with the Alzheimer’s Association is that everyone I’ve talked to with this diagnosis has had the same experience,” Kaufman says. “It’s like the doctors don’t want to say that there’s mental damage or Alzheimer’s or dementia. They try to steer away from that with a passion. ‘Oh no, you’re too young for that, it can’t be that.’ I think it delays a lot of the testing and a lot of the diagnoses.”
Despite these misgivings, Coppinger feels that progress is being made in the fight against Alzheimer’s and dementia, and the Alzheimer’s Association is at the forefront. She encourages local volunteers to become involved, and those affected by the disease to seek help from the organization.
With increased awareness and research, she believes a cure for the devastating disease can be found.
“We have a great deal of hope, and that is why we need funding for research,” she says. “There are so many research avenues being looked at right now. We hope to find the causes and we hope to find the cure. Hopefully in our lifetime, we’ll be able to know the answers.”
For general information, emotional support or resource listings, call the Alzheimer’s Association’s 24/7 helpline at (800) 272-3900, or learn more by visiting Alz.org/DelVal
Published (and copyrighted) in South Jersey Magazine, Volume 11, Issue 8 (November, 2014).
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