Fort Mill Times

Alzheimer’s disease experts: more funding, research needed


Clients at Adult Enrichment Centers in Fort Mill celebrate Independence Day two weeks ago.
Clients at Adult Enrichment Centers in Fort Mill celebrate Independence Day two weeks ago.

This is part three of a series. The fourth and final installment will focus on the symptoms of Alzheimer’s disease and an update on Rita Alley’s condition.

Clinical trials are showing promising steps forward in the fight against Alzheimer’s disease.

Alzheimer’s disease is a progressive, degenerative disorder affecting the brain’s nerve cells, resulting in memory loss and behavioral changes, according to the Alzheimer’s Foundation of America. Early-onset, or Younger-onset, Alzheimer’s affects people under the age of 65.

Fort Mill resident Rita Alley, 63, was diagnosed with Alzheimer’s disease at 59 years old.

Alley’s son and caregiver, Chris Dingess, said the difficulty of cognitive diseases is that there is no chance for recovery or improvement.

“You slowly watch your mom go a little bit every day,” he said.

Alzheimer’s is the only disease among the top 10 leading causes of death in the United States that has no cure or way to slow or prevent it, said Beth Sulkowski, vice president of communications and advocacy for the Alzheimer’s Association’s South Carolina Chapter.

“That’s where we need to focus our efforts,” she said.

Sulkowski said the disease will cost Medicare and Medicaid $153 billion in 2015, but that the United States will invest just $586 million in Alzheimer’s research this year.

The senate recently proposed $350 million for Alzheimer’s research, which, if passed into law, would represent a 60 percent increase, said Samantha Kriegshauser, director of the Adult Enrichment Centers in Fort Mill. AEC was recognized nationally for its work with clients, including those with Alzheimer’s and other forms of dementia.

Kriegshauser said although clinical trials may be encouraging, they are “astronomically expensive.”

Alzheimer’s research as a whole, Sulkowski said, has gone slow due to a lack of funding and a need for volunteers. While the Alzheimer’s Association is the largest nonprofit funding source of research into the disease, more is needed.

“We need Congress to step up and fund Alzheimer’s research at the National Institutes of Health at a level proportional to this epidemic,” she said.

Kriegshauser said she has been an advocate of Alzheimer’s research and has worked with the Alzheimer’s Association. She said the National Institutes of Health needs to push for research into dementia research, much like it has done for AIDS, heart disease and cancer.

“Every time the NIH makes something their number one priority, we make huge strides with it,” she said.

Sulkowski said researchers are pushing early intervention as the best chance for treatment. Changes due to Alzheimer’s start to form 10 to15 years before symptoms appear, providing a window in which the disease may be able to be stopped before it damages memory and function.

Roper St. Francis hospital in Charleston is pinpointing its efforts on intervention. The university is seeking volunteers for its A-4 study, Sulkowski said. Doctors across 60 sites in America, Canada and Australia are looking for potential participants who may be at risk due to the buildup of certain proteins in the brain.

The trial seeks to determine whether an infusion of an experimental drug will prevent these individuals from developing the loss of cognitive functions associated with Alzheimer’s disease, Sulkowski said.

“It represents a whole new paradigm for us in the Alzheimer’s world,” she said. “We’re excited to see what the results are.”

Other research has focused on the accumulation of the amyloid beta protein, which is thought to contribute to the disease, Sulkowski said. The first phase of an early trial with Aducanumab, a monoclonal antibody for Alzheimer’s disease produced by the biotechnology company Biogen, showed promising results.

The antibody reduced levels of amyloid plaques in the brain and slowed cognitive decline in patients with mild disease during the early trial, the results of which were reported at the International Conference on Alzheimer's and Parkinson's Diseases and Related Neurological Disorders in France in March, Sulkowski said.

While the results are encouraging, Sulkowski said more testing is needed with a larger base of subjects and for longer periods of time. The company is moving into the next phase of clinical trials.

Many factors affect a person’s risk of developing Alzheimer’s or other cognitive conditions, including genetics, Sulkowski said.

“Genes have been shown to put us at a greater risk,” she said.

Younger-onset Alzheimer’s can be caused by a rare variant of the disease that is carried in family members who inherit the dominant gene, Sulkowski said. Alley’s grandmother, her oldest sister and brother died from the disease, Chris said.

Kriegshauser said some medications aimed at treating symptoms of cognitive diseases exist. Exelon Patch releases Alzheimer’s medication continuously and the active ingredient, rivastigmine, has been shown in clinical trials to help with memory, communication and reasoning, according to the treatment’s website.

However, medications are not a cure, Kriegshauser said.

“Right now, it’s the best we’ve got,” she said.

While Alzheimer’s can affect anyone, research has shown that changes in diet and daily habits, such as eating well, getting enough sleep, not smoking, doing exercise and participating in social activities and lifelong learning, may help reduce a person’s risk of cognitive decline, Sulkowski said.

“We’re all interested in trying to make sure we keep our brains as healthy as we can and give ourselves the best chance for a long and healthy life,” she said.

Learn more:

Caregivers of someone with any type of dementia, not just Alzheimer's, can call the Alzheimer’s Association anytime at 800-272-3900 or visit at alz.org/sc.

Clinical Trials

To find a clinical trial or to learn more about existing opportunities, visit alz.org/trialmatch.

Monthly support groups meet in York County:

▪  10:30 a.m. the first Tuesday of each month at the Adult Enrichment Center, Rock Hill

Facilitator: Dee Curran 803-327-7448

▪  6:30 p.m. the second Wednesday of each month at 852 Gold Hill Road, Suite 203, Fort Mill

Facilitator:Vina Pesaru, MD 803-396-2155

Find other groups at alz.org/sc.

Upcoming fundraiser:

2015 Walk to End Alzheimer’s is Sept. 26 at Old Town, Rock Hill – Corner of Dave Lyle Boulevard and East Main Street. Registration 9 a.m., ceremony 9:45 a.m., walk 10 a.m.

Register and learn more at alz.org/walk

This story was originally published July 13, 2015 at 4:08 PM with the headline "Alzheimer’s disease experts: more funding, research needed."

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