Alzheimer's Club

Alzheimer's incidence expected to grow but research not in budget

The incurable brain disease affecting more than 60,000 South Carolinians warrants more attention than it's getting on the local, state and national levels, national experts told an Orangeburg audience last week.

Without a cure, the incidence of Alzheimer's disease in the state is expected to increase by 49 percent by the year 2025, with more than 75 percent of these individuals expected to receive in-home care by an elderly spouse or adult child, according to Kate Gordon, National Alzheimer's Association associate director of grassroots advocacy.

"There are a high number of people with Alzheimer's, about 50 percent, living in nursing homes, but we know that families take on the greatest burden of care," Gordon said, speaking at Victory Tabernacle Deliverance Temple Wednesday.

The situation with federal funding for Alzheimer's research and care programs is discouraging, she said. Research funding has been on a steady decline since 2003, and funds for key Alzheimer's care program, including the 24/7 Contact Center, Safe Return and the Alzheimer's State Matching Grants Program, have been eliminated in the president's 2008 budget proposal to Congress, she said.

The FDA has over 20 drugs "in the pipeline" for Alzheimer's prevention or treatment, but money to move them forward has been declining steadily over the last 15 years, which dashes NAA's hopes for a cure within the next five to 10 years.

The reductions decrease services available for families, and Gordon encouraged such families to communicate with elected officials about what is needed.

The national association will hold its 19th Annual Public Policy Forum March 18-20.

Via "Virtual Visits," on-line users can write their personal Alzheimer's stories and voice their opinions against proposed budget cuts. State advocates will send the letters to the appropriate elected officials in Washington, D.C.

With baby-boomers approaching the highest risk age, 65, the numbers with Alzheimers will explode, Gordon said. A cure would decrease the burden on the country's overall health care system.

Alzheimer's is not "just a quiet, behind-closed-doors family issue," she said. "It's touching an entire community," said Gordon, stressing the need for caregivers.

Striking a population under 60, early-onset Alzheimer's disease is challenging for doctors specializing in older patients to diagnose, Gordon said. Ineligible for Medicare, early-onset victims don't have the resources of older patients, which offers an extra challenge to communities trying to offer services.

Hospice Care of Tri-county's Orangeburg office serves Orangeburg, Bamberg, Calhoun and Barnwell counties and a portion of Aiken County. Jerri Zeigler, community education coordinator with Hospice Care, is working to create an Alzheimer's support group with meetings likely rotating between her office and Morningside Assisted Living Center.

"My husband's grandmother died a few years ago with the disease, so it's very important to me to have a support group," she said. "I know how important it is to the community."

Hospice care can offer a critical link for those in the late, terminal stages of the disease. "People don't see hospice as a service for people with Alzheimer's disease because it's not widely known that it is a terminal disease," she said.

Family members and other caregivers experiencing burn-out can take advantage of respite care and other services that hospice provides, said Janice Harris, community education coordinator at Hospice Care of Tri-County's Columbia office. The respite program provides care for up to five days and can be used every three months, according to Zeigler.. She said the office has also helped individuals with light, taxes and other bills.

Harris, who has cared for four of her own family members with Alzheimer's, said she speaks at senior centers about how to detect the early stages of the disease. Memory loss and language problems are among the 10 warning signs of the disease.

Harris also does a 'Caring for the Caregiver' program and education programs on maintaining the brain, staying healthy, and understanding the challenging behaviors of those with Alzheimer's in nursing facilities and homes..

In book, "When Roles Reverse: A Guide To Parenting Your Parents," author Jim Comer identifies issues in families that need attention and helps them develop an action plan.

Among the 50 questions Comer said families must ask to save time, money and tears are: Who will be the primary caregiver or share responsibility when a parent becomes ill or incapacitated? What specific plans has the family made for a sudden parental illness or emergency? T

"Have a family discussion in a relaxed atmosphere, not in the middle of a holiday celebration, birthday or anniversary. These questions deserve a time slot of their own. If a family is geographically dispersed, ... arrange for a conference call," Comer says in his book.

Gordon is particularly excited about the creation of a local support group which she said will empower the community to fight Alzheimer's more effectively.

Because there is no cure, NAA advocates families getting involved in the fight for a world without the brain disease.

"People are suffering in our communities, and we need help," Gordon said.

Source: Dionne Gleaton, T&D Staff Writer. Alzheimer's incidence expected to grow but research not in budget (19 Feb 2007) [FullText]

T&D Staff Writer Dionne Gleaton can be reached by e-mail at dgleaton [at] timesanddemocrat.com

Labels: Alzheimer's funding, Alzheimer's grant