BECKLEY — When Terri Tilley moved to the Beckley area from Princeton, she had no idea that when she applied for a job she saw in the newspaper, she would find a passion for Alzheimer’s education.

“I had no idea that senior centers existed and what they did, but I love working here and would not trade my job or anything,” she said.

After finding her passion working for the Raleigh County Commission on Aging since 2001 as the Alzheimer’s services coordinator, she has worked to ensure that those who care for patients with Alzheimer’s have the knowledge and support they need.

For her efforts, she will be a 2011 Rockefeller Award recipient at the May 20 “Thanks for the Memories Luncheon” at the Marriott hotel in Charleston.

The Rockefeller Award is presented annually to West Virginians who support Alzheimer’s education, patients or research.

Tilley explains that part of her job with the commission is to educate paid caregivers about Alzheimer’s disease, so she began doing research and watching videos to better teach others.

“My father-in-law had Alzheimer’s, and my mom had vascular dementia, strokes, so as I learned about Alzheimer’s, I said, ‘I wish we had known this during the time we took care of them,’” she recalled.

At that moment, she knew Alzheimer’s education in the county should not just be limited to paid caregivers.

In 2004, she created the Alzheimer’s Family Support Group so that she could give pamphlets and information, “but it has become time for them to talk about their problems and help each other. Sometimes I’m just there; they help each other during that time,” she explained.

Tilley, still seeing a need for both a support group and a class on Alzheimer’s, helped to create the Alzheimer’s Caregiver Class in 2008, a six-week course to help family caregivers cope with the challenges of caring for an individual with Alzheimer’s disease and related dementia.

She explained much of her work with the disease is informed by a 2007 study by Mary Middlemen of the NYU Langone Medical Center, which asserts that individuals with dementia who have caregivers with counseling and support have better health and stay out of the nursing home longer.

The caregiver class was born from her desire to provide this service for those with the difficult task of caregiving and includes information on behaviors, safety, legal issues and managing stress.

To date, said Tilley, more than 100 people in Raleigh County have attended the class.

Tilley explained that caring for individuals who have dementia can be one of the hardest jobs.

“They have to deal with a person who sometimes does not even know who they are,” she said.

In one of her support groups, she had a man who cared for his wife with the disease.

“Some days, she thought he was her dad or brother,” she said. “Neither she wanted to have help her take a bath. You have to deal with day-to-day things that can become a complex struggle.”

She pointed out that caregivers for those with Alzheimer’s disease are often caring for someone who accuses them of stealing.

“The support group is really helpful. Many of them come in there feeling like they are the only ones who are dealing with a particular behavior ... and they come in and say ‘Does your wife do this?’ and they come out thinking ‘At least we are in this together and working through this together,”’ Tilley said.

Sometimes the support group functions as a much-needed break, and they don’t talk about Alzheimer’s at all, she added.

Tilley’s concern is that people get diagnosed with Alzheimer’s but are not directed toward classes, support groups or a source for help and information.

“I would love to see a time when the diagnosis is made and doctors say ‘Here is a class you can go to and learn about the disease, and here are support groups,’ but it is not that way right now. You have to ask if you need help.”

She said that throughout her years working with Alzheimer’s, she has seen an increase in awareness, a little improvement but “not a whole lot of change.”

Tilley added that she would love to see a time when the disease is cured and she needs to find another job, but for now, she wants to continue providing support, services and education for the Raleigh County community.

“I wish more people would understand that it is not anything to be embarrassed about. There is a stigma attached to mental illness, but Alzheimer’s disease is not a mental illness; it is a physical one,” she explained.

“In those with the disease, brain cells are dying. A caregiver may get upset with their family member because they are acting different, and they tell them to try harder to remember things, but that is not really fair. Their loved one is trying to function with less brain cells ... understanding the disease is so important for caregivers,” she said.

Terry Tilley grew up in Wyoming County and graduated from Glen Rogers High School. She is a registered nurse with an associate degree from Bluefield State College and is married to her high school sweetheart, Ray, and together they have two children and three grandsons.

— E-mail: splummer@register-herald.com