It was the “little things,” the Neff resident said, explaining that her once-vibrant son, a husband and father of two who loved to play golf, grew more and more forgetful. His diagnosis came almost two years after Howard had already noticed some of the most explicit signs of Alzheimer's, first discovered 100 years ago this month.
While increasing age is the greatest risk factor for the degenerative brain disorder, an escalating population nationwide is being diagnosed with the disease at a much earlier age than the average of 65 and above. There was no history of the disease in Howard's family.
“You can't understand why this happens to people,” she said.
Earlier this month, a panel of the nation's leading health experts gathered in Washington, D.C., to lobby for increased research funding to capitalize on the progress being made toward earlier diagnoses, new treatments and prevention. And to find a barrier between the disease and a growing number of Americans falling victim to an epidemic that is said to be tied to the aging baby boomer generation.
According to the Alzheimer's Association, the largest private funder of Alzheimer's research, an estimated 4.5 million Americans are living with Alzheimer's. By 2050, that estimate is expected to range between 11.3 million and 16 million. The Alzheimer's Association, a nonprofit organization, has been lobbying for increased commitments to Alzheimer's research since its inception in 1980.
In addition to the call for increased funding for research, the financial burdens imposed on individuals, families and governments from caring for Alzheimer's patients were addressed at the Washington, D.C., meeting.
The need for increased support for caregivers was also discussed, a subject that local Alzheimer's advocate Regina Nolan said is critical to patients and their caretakers. According to the Alzheimer's Association, approximately 4,000 Cumberland Valley residents suffer from Alzheimer's disease.
“Alzheimer's is devastating. The person caring for that loved one ... their life is on a routine. Routine is very important, but it's important for that person to take care of themselves,” said Nolan, former chair of the local Alzheimer's Association Memory Walk, which helped raise $6,800 during its latest walk in September.
Because the majority of Alzheimer's care is provided by family members, Nolan stresses the importance of caregiver support meetings and Alzheimer's workshops that offer helpful resources.
“It is so important for the caregiver to take care of themselves,” said Nolan. The caregiver support meetings, usually held at the Harlan County Senior Citizens Center or at local nursing homes, are momentarily on break until spring, she said.
Workshops are also planned for this spring and summer and will offer information on a range of Alzheimer's issues, from prevention and care to coping with the emotional aspects of caring for a loved one with Alzheimer's.
The meetings and workshops, Nolan said, provide “a good avenue for folks who are caring for somebody.” But there are a number of other resources, including the Alzheimer's Association's 24/7 helpline, that are available to caregivers and individuals interested in learning more about Alzheimer's and other types of dementia.
“If it's really late at night and you just need somebody to talk to ... that's what they're there for -to encourage and give support,” Nolan said, adding that an abundance of information is available through the Alzheimer's Association at no charge.
“It's unbelievable what they can send to you at no charge. I encourage anyone out there, even if they don't want to come to a meeting, to call that number and get those resources,” she said. Like the local support group meetings, phone calls to the association are confidential, and those who wish may call anonymously.
Nolan, who became active in local Alzheimer's initiatives through a leadership project her son pursued in college at the University of Kentucky, said individuals who open up about their caregiving experiences may find some healing in coping with “a terrible, terrible, cruel disease.”
Harlan County native Barbara Bailey agrees.
The WKYT-TV news anchor has served as honorary chair of the Harlan memory walk for the last four years, strolling with her mother and some other close family and friends for what she considers to be a great cause, but “a cruel disease that touches the entire family.”
Bailey's father has been diagnosed with Alzheimer's.
“As we grow older together, I think most people will eventually come face to face with this disease, either with a family member or friend. I want to help raise money for this cause, not only to help my father, but so that others won't have to watch someone they love fall victim to this disease,” she said.
Because many families experience some state of denial when symptoms of Alzheimer's first appear in their loved one, Bailey said some may not “reach out for help as soon as they should.”
“Nobody wants to face the fact their loved one has Alzheimer's,” she said, adding that the information and support through organizations like the Alzheimer's Association is “invaluable.”
“They can really help people understand and cope with this disease,” she said.
Bailey said she is optimistic that a cure for Alzheimer's is on the horizon.
“Won't it be wonderful when we find a cure and no longer need to hold a memory walk? I believe we're getting closer every day. Some of the leading research is being done here in Kentucky. I think it's very promising, and I look forward to the day when our lead story on WKYT is that a cure is found for Alzheimer's,” Bailey said.
The Alzheimer's Association notes that “the most compelling evidence” of real progress toward Alzheimer's disease may be the growth in clinical testing of new approaches to treatment, prevention and diagnosis.
Also, according to the association, the Alzheimer's Disease Neuroimaging Initiative (ADNI) last year began recruiting Alzheimer's patients for a $60 million, five-year study expected to establish standards for acquiring, processing and interpreting brain images. The goal is to “identify individuals at high risk for Alzheimer's, track disease progression and monitor treatment effects.”
As for Rose Howard, her experience with her son has raised concerns and emotions often experienced by children caring for their parents.
“I've got two other children. It's a worry on a mother,” she said. Her son has been living with the disease for roughly 10 years and is being cared for in a facility close to his home in northern Kentucky.
Her most recent visit was a good one, she said, explaining the gentle nature and healthy spirit that continues to exude from her son.
“Still, he looks the picture of health,” she said.
In 1983, President Ronald Reagan signed a proclamation declaring November as National Alzheimer's Disease Awareness Month, 11 years before he was diagnosed with the disease.
Editor's Note: November is National Alzheimer's Disease Awareness Month. This is the last of a three-part series on the mystery of Alzheimer's, how the disease is changing and what health professionals are predicting for the future.