By Caroline Boyer
Former Congressman Dennis Moore and his wife, Stephene, each now have a permanent piece of jewelry: a purple Alzheimer’s Awareness wristband.
Since the six-term congressman announced earlier this year that he was diagnosed with the disease in 2011, the Lenexa couple have been taking steps to turn a negative into a positive: to promote awareness of Alzheimer’s and the growing number of people affected by it. Their wristbands serve as a daily reminder to share the message with others.
“It’s really to help the community understand that you can say the word ‘Alzheimer’s.’ You can talk about it with your family,” Stephene Moore said. “Very sadly, we know people, one family in particular, … they are not allowed to talk about it. The husband … thinks he’s going to snap (his wife) out of it. That’s a bad attitude to have; that’s exactly what we don’t want.” The Moores say they are approached more and more often by others who have questions about the disease.
“That’s why we want to raise public awareness and encourage people if they think there is a concern, to maybe get a diagnosis or get a medical examination, find out if there’s a real problem,” Dennis Moore said. When Dennis, 66, began to exhibit some signs of memory loss, the first doctor the Moores saw blamed it on stress. But that didn’t ring true for them, so they visited another doctor at St. Luke’s Hospital in February of last year. The official diagnosis came four months later.
Dennis Moore’s father had the disease, so Dennis said it wasn’t totally unexpected. But before his father’s death in 2005, the Moores had experienced the discomfort of not knowing how to help his parents, escalated by the fact that they lived hours away in Wichita.
“It was hard to watch; you didn’t know what to do,” Stephene Moore said. “You didn’t know what was going on, and we were at a loss for how we could really help, aside from being there for (Dennis’) mom.”
The Moores won’t be facing those problems this time. They are taking advantage of services offered through the Alzheimer’s Association’s Heart of America chapter in Prairie Village, including support groups, which they attend twice monthly. Dennis attends a group for those with the disease, while Stephene attends a group for caregivers, which she says has helped her deal with the daily frustrations that come from the short-term memory loss Dennis has been experiencing. “I would encourage people who have received the diagnosis to get involved with a group like we are,” Dennis said. “I think that really does help the family; it helps understanding — the people involved understand what they can do to better deal with the situation.”
The Moores recently have made greater advocacy efforts, going to Washington, D.C., in April to speak at the National Alzheimer’s Association Advocacy Forum. In June, they spearheaded a fundraiser for an education and awareness initiative, now named in their honor, at the Alzheimer Association’s Heart of America chapter.
Dennis is currently taking just one medication for his Alzheimer’s and has tolerated it well. A challenge for many is finding the right medication. He has adopted other healthy practices in the hope of slowing the disease’s progression, taking fish oil and multivitamins, as well as making a daily smoothie with coconut oil, which is purported to help Alzheimer’s patients, and walking daily.
They have made basic plans for the care decisions they will have to make in the future, though they hope those decisions are far away.
“We’re just dealing with it day by day,” Stephene Moore said. “We know what to expect, but of course we don’t know when to expect it. So between now and then, you just deal with it day to day and continually field questions ... we hope to continue to educate people and heighten the awareness because it’s not going to go away.”
5.4 million Americans have it The Alzheimer’s Association reports that 5.4 million Americans have the disease, and that number is expected to grow to 13 million by 2025. Alzheimer’s is now the sixth-leading cause of death in the country, and the direct costs of caring for those with Alzheimer’s and other forms of dementia are projected to total $200 billion in 2012. In Kansas, the number of those with the disease is expected to increase from 53,000 in 2010 to 62,000 in 2025.