Advocates aid in chronic disease awareness

Denise Baker, who moved to Asheville eight years ago, has lived during that time with a chronic disease — dementia. “I’m retired from an exciting yet stressful job with the U.S. government,” says Baker, who suffered a stroke 20 years ago at age 52. “I was very lucky — I was alive, I was mobile, and I was fairly lucid; and I had a good friend who came to see me every day in the hospital. We laughed about most everything that was going on — my inability to read or write, the hospital food, my throwing up on her shoes … and somewhere along the way I realized that humor and not taking things too seriously helped me recover from the effects of the stroke.”

Looking back, Baker can pinpoint the stroke as the beginning of her cognitive decline into vascular dementia. About four years ago, it dawned on her that the confusion she had been developing must be more than aging, so she took some tests which showed mild cognitive impairment, leading to a diagnosis of dementia. Baker joined a memory support group. “Asheville has a lot of help for those of us with cognitive and age-related issues,” says Baker, who is on the steering committee of Dementia Friendly WNC. “We are just like everybody else. We have issues too, and we are doing the best we can to cope with them.”

According to the U.S. National Center for Health Statistics 88 percent of Americans over 65 years of age are living with at least one chronic health condition. Economic Development Asheville reports that 18 percent of people living in Buncombe county are over 65 years old. With nearly a fifth of Buncombe County residents likely to have one or more chronic health conditions, professionals in Asheville are working to educate, support and assist those with chronic diseases.

Diane Saccone, director of healthy aging initiatives for the YMCA of WNC, says if we can change the individual, then we can change the community, which in turn benefits the larger society. The YMCA of WNC offers an array of chronic disease prevention programs, such as diabetes prevention, fall prevention, LIVESTRONG cancer program and Parkinson’s disease maintenance and prevention.

Because many baby boomers have several chronic diseases, says Saccone, the YMCA recently started its Enhanced Fitness group exercise program for chronic diseases, especially those which are potentially debilitating, such rheumatoid arthritis. Most recently, the Enhanced Fitness program launched Pedaling for Parkinson’s and Power Moves — adaptive wellness recovery programs developed for people with degenerative movement diseases.  Both programs began the first week of April and are ongoing, and are allowing new members to the program on a first come, first serve basis. The programs have been filling up.

Steve Miller, adaptive wellness instructor at the YMCA of WNC, was diagnosed five years ago with Parkinson’s disease. “Power Moves was not a lightbulb: it was fireworks,” says Miller. “It gave me empowerment to live a normal life.” Miller became involved with Mission Pardee Health Campus and Care Partners to teach classes to help improve his own condition as well as help others — “to be the pied piper of PD [Parkinson’s disease] patients in the area,’’ he says.

Miller helped form a partnership between CarePartners and the YMCA to offer Power Moves and Pedaling for Parkinson’s at the YMCA of WNC. Saccone and Miller are developing a referral system with local neurologists and physical therapists to refer people with the chronic diseases to both programs.

Power Moves, an ongoing program that also began last month at the Reuter Family YMCA and the YMCA at Mission Pardee Health Campus, is a once a week exercise program that addresses cognitive as well as physical issues. “It’s not just muscles that twitch; there is an emotional engagement as well,” says Miller. “There is apathy and depression, attentional issues, executive functioning and how you make decisions.”

Power Moves fights the basic things that hit us, Miller says, and we [those with Parkinson’s] have to ‘power up’ to stand up straight, rock and reach, and [do] functional things like reaching to get a hat out of the top of the closet. There are rotational issues from the disease which cause difficulty with transitions, such as getting out of cars or stepping one foot at a time to get moving, he continues. “We do the exercises in five different positions: standing, sitting, crawling, prone and supine. Exercise is medicine, and it has been proven to improve brain health. The cognitive piece to Power Moves is huge.”

Saccone notes that “all of our evidence-based chronic disease prevention programs [at the YMCA], which are in conjunction with Mission Health Partners, have expanded into the community.” All the Enhanced Fitness programs are currently offered in senior centers and rehabiltation centers such as Emerald Ridge and Shiloh community complex. “With Hominy Valley YMCA opening in September, the reach will be even further,” says Saccone. “With 5400 adults turning 65 every year in the state of North Carolina, the attention and research is vital.”

Older adults tend to isolate in later years, says Miller — whether from a spouse becoming ill or passing away, or a difficult financial situation. These [situations] can negatively impact the life of an adult, especially those with a chronic disease. The social piece of the puzzle, he says, can improve the outcome of those living with chronic diseases. “Social interaction is so powerful on top of the exercise,” says Miller. “It’s a game changer.”

Social interaction is important because it is good for the brain, says Cathy Hebert, geriatric nurse, board member and one of the founders of Dementia Friendly WNC. “Eating well, exercising and reducing stress are important to stave off dementia, but another aspect that is well researched is social connection. It helps cognition much more than we ever thought it would. People with dementia can feel isolated and with no support.” says Hebert. “We are social beings, and without that, we decline cognitively, and we end up with depression, which also aids in cognition decline.”

According to the WNC 2014 census, approximately 11 percent of adults over the age of 65 have dementia. Hebert notes that dementia is the only disease in the top ten list of chronic diseases that has no cure and no treatment. Dementia Friendly WNC  focuses on what the Asheville community can do to help people with dementia live well. Its goal is to reduce the stigma by raising awareness and transforming attitudes. It offers a two-hour educational awareness program that emphasizes communication techniques to help those with dementia. “There is a lot of fear that is unfounded and a lot of incorrect information,” says Hebert, who brings the program to places such as the YMCA of WNC and the Asheville Art Museum.

Dementia Friendly WNC also collaborates with local business owners to signify their place of work is ‘dementia friendly’ — meaning the business has received training about how to interact with people who have dementia in a patient and compassionate manner. Those living with dementia need a little extra time to count their money or walk to the counter, says Hebert.

Stephanie Stewart, aging specialist for Health Promotion and Disease Prevention at Land of Sky, agrees that social interaction and support are vital to chronic disease management. Stewart coordinates and trains volunteer facilitators for evidence-based programs serving Buncombe, Henderson, Madison and Transylvania counties. Such programs utilize deep breathing, muscle relaxation and tips for managing pain and fatigue.

Stewart also offers the Stanford University Chronic Disease Self-Management Program, called Living Healthy, which is funded through state and federal money by the Older Americans Act. Living Healthy, like Enhanced Fitness and Dementia Friendly WNC, is designed to be brought into community settings, where it offers communication skills, education, meal planning, and exercise. Stewart notes that Living Healthy poses a question to all its participants: ‘What is one simple step for this week for a big picture of better health?’ “Many times people with chronic conditions feel hopeless, frustrated and powerless because the body is doing something that is out of their hands,” says Stewart. “This program offers participants insight and expertise for what works and what doesn’t.”

Living Healthy is offered once a week for six weeks and includes goal setting and action planning with two trained facilitators in a small group. It is held at different locations around the counties served, including libraries, churches, community centers and senior centers. Stewart asks communities if they are interested in having the program and finds facilitators to run the free six-week series.

Denise Young, regional manager of the Alzheimer‘s Association of Western Carolina, says education and support are essential for those living with chronic diseases as well as for caregivers. The association provides educational pamphlets, a 24/7 hotline and presentations in the community about financial planning  and the basics of the disease, such as what to expect as changes take place in the brain.

“A lot of research has been done to show a connection between heart and brain health, particularly in regards to diet,” says Young. “There are several clinical studies that look at the Mediterranean diet that is rich with oils and nuts and less meat. Exercise is an important piece as well because the brain is fed by a healthy network of veins and arteries. Anything that affects the heart affects the brain.”

Baker, who strives to maintain a healthy and full life following her stroke and decline with dementia,  joined a memory support group four years ago, which has positively affected her life. “Everyone feels like we are family because each of us understands what the other is going through, and many people talk about that. No one gets it unless they have the disease,” says Baker. “I think it’s good for the community to realize there are people with dementia among them. They need to be more patient with us, and also they need to be more patient with everyone. We all need to take care of each other.”

More Info
Economic Development Asheville
ashevillechamber.org/economic-development/research-and-reports/county-demographics-reports

Emerald Ridge Rehabilitation and Care
centers.consulatehealthcare.com/nc/asheville/25-reynolds-mountain-blvd..html

Dementia Friendly WNC
landofsky.org/dementiafriendly

Dementia Friendly America
www.dfamerica.org

Power Moves
pwr4life.com

LIVESTRONG
ymca.net/livestrong-at-the-ymca/

Diane Saccone
dsaccone@ymcawnc.org or (828) 575-2904

Alzheimer’s Association of Western Carolina
alz.org/northcarolina

National Center for Health Statistics
cdc.gov/nchs