MORGANTOWN — Alzheimer’s and dementia may be two of the more puzzling diseases being researched by modern medicine.
Discovered in 1906, science has come a long way in understanding the diseases.
However, a treatment is still something modern medicine has yet to accomplish.
Working toward that, the Alzheimer’s Association, founded in 1980, is working on extensive research as well as offering resources to those affected by the disease.
Sharon Rotenberry, executive director, and Carolyn Canini, program director of the Alzheimer’s Association, both have family members who were diagnosed with Alzheimer’s. In working with the association, they hope to reach out and educate the community on the disease.
“We’ve got just a push going on in here in Morgantown, in the fall we have Walk to End Alzheimer disease and it helps to raise awareness and talk about our research that we have going on,” said Rotenberry.
She said the organization is statewide, covering all 55 counties. Coming up is Alzheimer’s and Dementia University at WVU for family and professional caregivers, and in June Praise in Purple where a number of church congregations wear purple to show awareness for Alzheimer’s.
The Pointer Study is also coming to Morgantown — a lifestyle study that was conducted in Europe and is about lifestyle and how it may have an effect on someone developing Alzheimer’s later in life.
For many other diseases, the cause has been determined as well as how to reduce risks and offer treatment or inoculations.
“Not the case with Alzheimer’s disease, so that’s part of, I guess for me, the reason there’s such an urgency about the work that we do is because we haven’t turned that corner yet for research in Alzheimer’s,” said Canini.
All services are free from the Alzheimer’s Association. There is a toll-free number available 24/7 that can be helpful to a caregiver or loved one with Alzheimer’s. The caller will always receive a human being on the other line who is willing to help.
“That’s really one of our flagship services. Especially in a rural state like we have, is connecting with people through the helpline. Sometimes we have professionals that call and they have patients that have Alzheimer’s disease or dementia and they want medical resources or tips on bathing and care that sort of thing,” said Canini.
They have a support network throughout the state and train volunteers to lead support groups.
“Education is a huge part of our mission within the state. It’s just to make sure everybody has a base understanding of what dementia is, what Alzheimer’s is and how we can help as community members to make It a better place for people,” said Canini.
They also have a large focus on outreach to medical professionals. The association encourages doctors to refer patients to the organization for resources or even to network with other families going through similar situations.
“Sometimes the best thing you can do is put people in touch with other people that are going through the same thing, and we’re mindful of the fact that this could be an isolating disease,” said Rotenberry.
Stigma is something the organization hopes to break with proper education. They aim to have heightened involvement in day-to-day life with those affected by the disease. The education provided can go a long way in reducing the stigma of those with memory loss, said Canini.
Estimates are that 38,000 people live in the state with Alzheimer’s and dementia and 108,000 people are providing caregiving services at no charge.
Rotenberry said she thinks the best is yet to come, and it may be sooner rather than later. She’s optimistic when learning about research developments and the studies being conducted to find a cure.
Canini said she would like to see the state become a more dementia friendly state as well. She said not just in the senior service sector but also in banking, or where someone might get an oil change, the grocery store, or even nail salons.
“That’s really my vision for our state is that we would lead our country in dementia capability and just awareness and that when people think of a good place to live when you’re a family caring for someone with dementia that they’ll think of West Virginia,” said Canini.