WELLNESS
Forget me nots
Local dementia groups help individuals, caregivers
BY JESSICA WAKEMAN jwakeman@mountainx.com In 2004, Joyce Robinson and her siblings watched as their mother was diagnosed with dementia. “We struggled with it because we had never seen this before,” Joyce recalls. “We saw the effect it took on the family.” They cared for their mother until she died in 2012. In 2018, Joyce’s father-in-law also was diagnosed with dementia. He died in 2019. Joyce and her husband, Vernon Robinson, moved from Beaufort, S.C., to Asheville to retire that same year. The Robinsons’ experiences, and what they describe as a lack of dementia-related support services in Beaufort, led them to start a nonprofit in Asheville for caregivers of loved ones with dementia called Dementia Partners AVL. The couple host twice-monthly support groups, as Vernon puts it, “to be a beacon of light for one another as we come together to share and give support for loved ones with this disease.” An average of 10 people attend each meeting. (For more information about Dementia Partners AVL, contact dementiapartnersavil@gmail.com.) According to the Dementia Friendly WNC, there are approximately 20,000 people with dementia living in Western North Carolina. But dementia affects even more people: the loved ones who provide unpaid work as caregivers and like the Robinsons, are suddenly coping with cognitive impairments in people they’ve known their whole lives. Navigating a dementia diagnosis in the family can be a confusing and lonely experience for both the patient and the caregiver. In
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MOUNTAINX.COM
BEACON OF LIGHT: Vernon Robinson, left, and his wife, Joyce Robinson, founded a support group called Dementia Partners AVL after experiencing dementia on both sides of their family. Photo courtesy of the Robinsons Buncombe County, there are numerous nonprofits to provide education and support. DIFFERENT DIAGNOSIS, DIFFERENT PROGNOSIS Dementia itself is not a disease. Rather, “dementia” refers to the general memory loss, cognitive impairment and lack of problem-solving ability in aging individuals, according to the Centers for Disease Control and Prevention. “Dementia is an umbrella term for many different types of cognitive impairment — it could be
Alzheimer’s disease, vascular disease, a mixture of those [or] a different type of dementia altogether,” explains Elizabeth Lackey, lead care manager at MemoryCare, an Asheville-based nonprofit that provides support for individuals with dementia and support for their caregivers. “Each diagnosis comes with a different prognosis and a different picture of what’s going to happen in the future.” As people age, they forget names or retell stories. However, the signs of dementia are different because they impact daily life, Lackey says. This includes repeatedly asking the same questions, misplacing items, getting lost in familiar places and having difficulty with functional tasks like cooking. A long-term study published in October in the journal Neurology found that one-third of individuals ages 65 and older have dementia or mild cognitive impairment. (Mild cognitive impairment is in between the expected changes to memory with aging and the more serious signs of dementia, the Mayo Clinic explains.) The study also found prevalence rates were similar by gender, but dementia was more prevalent in Black individuals. Mild cognitive impairment was more prevalent in Hispanic people, compared with White people.