The UNC School of Social Work is partnering with four counties in Western North Carolina to explore ways in which communities can foster a better quality of life for adults living with Alzheimer’s disease and related dementias.
The development of these dementia-capable pilot communities is among dozens of recommendations from a statewide strategic plan generated over the last year and aimed at improving care for dementia patients, supporting their families, reaching adults who are underserved and improving data collection and research around treatment and prevention. The School’s Jordan Institute for Families (JIF) and the Center for Aging Research and Education (CARES) are facilitating the pilot project, which recently launched in Buncombe, Henderson, Transylvania and Madison counties.
“What we’re talking about is a holistic 360-degree look at a community and how it can be more sensitive to and supportive of persons with dementia and their families,” said Linda Kendall Fields, an aging and disabilities program specialist who is working on the pilot project as a clinical assistant professor with the Jordan Institute. (The working team also includes: Gary Nelson, associate director for JIF’s Program Development and Training Initiatives and the Thomas Willis Lambeth Distinguished Chair in Public Policy; Mary Anne Salmon, a CARES clinical associate professor; and Sarah Marsh, a JIF social research associate.)
North Carolina began to take a closer look at Alzheimer’s disease and related dementias last year, when the N.C. Institute of Medicine (NCIOM) created and led a task force focused on helping to develop a state strategic plan on the subject. According to the NCIOM, more than 160,000 people in the state currently live with Alzheimer’s disease. This number is projected to increase to more than 210,000 by 2025.
Public and private agencies have been aware of this expected growth for some time, but their focus and attention has remained largely on other challenges such as improving the welfare of children and the state’s mental health system. As yet, there has been limited focus on the needs of the state’s growing aging population, Nelson said. The hope is that the focus will change with this new state plan and the community initiatives associated with it, he said.
“I think the Jordan Institute’s interest is to help make this issue more visible and to give voice where a voice has been lacking,” Nelson said. “Alzheimer’s disease and related dementias are hugely costly financially and hugely costly personally in terms of the impact on families.”
The Alzheimer’s Association estimates that 448,000 North Carolinians provided $6.2 billion in unpaid care for loved ones with dementia in 2014. As the disease progresses, the emotional costs for caregivers—largely spouses and adult children—also increase. Many may miss more days of work and experience stress, anxiety and depression, especially around decisions of moving a family member into a nursing home or other long-term care community.
The pilot project also aims to challenge the story and stigma associated with dementia, which is not part of the normal aging process, Kendall Fields noted.
“So, what I am seeing in this pilot is more attention on the personhood of the people who have dementia because there’s a huge stigma that’s assigned to it,” she said. “People think end-stage right away. So there’s a real desire with communities to honor persons who are going through that process and give them as much autonomy and control of their lives and to help them be engaged with their communities.”
Work within the pilot communities will likely take two to three years to complete and could involve assessment of current services, education and awareness, and training to help individuals, businesses, faith communities and others relate to people with dementia and better support them. However, the pilot team, which currently includes local advocates, representatives from public and private agencies and persons living with dementia, must first develop a common agenda, which is part of the “collective impact” model the team will be following, Kendall Fields said. Employing such a framework is vital when tackling urgent and complex issues that don’t have easy solutions, she said.
Embracing this model also gives the pilot communities more room to learn from each other and to test and adapt ideas as they go along, Nelson said.
“One of the things we want to know is what is success? We’re not talking about more money or more services,” he said. “We want to know how can life really be different. So what does success look like, especially for anybody in your family or anyone in the community who you value or have a relationship with that is facing this? Do you know what they’re going through?
“So we’re really not looking to provide expert answers on high. We’re looking for the questions that citizens have and then we will listen, learn and work with them to co-create the solutions that work best in their communities.”