Dementia and Brain Health: the Role of Area Agencies on Aging
As the number of older adults living in the United States grows, the number of individuals living with dementia grows along with it. People who live with dementia and their caregivers often require or benefit from a broad array of services and supports that help them continue living in the community. As a result, Area Agencies on Aging (AAAs), which have decades of experience helping older adults and people with disabilities remain in their homes and communities, are at the front lines of providing critical services to individuals with dementia and their caregiver…
…People with dementia, particularly those in the middle and later stages of their disease progression, require support, which is a hallmark of all programs provided by AAAs. Eighty-eight percent of individuals with dementia living in the community need assistance with self-care, mobility and household activities, compared to 43 percent of those who do not have dementia.10 As a result, AAAs, family and friend caregivers, and formal, or paid, caregivers, all play a critical role in supporting individuals living with dementia as they remain in the community.
Case Study: The Dementia Care Coordination Program: Jefferson Area Board for Aging, Charlottesville, VA
The Jefferson Area Board for Aging (JABA), an Area Agency on Aging serving older adults in Central Virginia, in partnership with the University of Virginia’s Memory and Aging Care Clinic and the state’s Department for Aging and Rehabilitative Services, implemented the Dementia Care Coordination Program pilot. This program, funded by the U.S. Adminstration for Community Living’s Alzheimer’s Disease Initiative—Specialized Supportive Services Program between 2015 and 2018, created a replicable model for providing integrated care for individuals living with dementia and their caregivers.
JABA and the Memory and Aging Care Clinic each hired Dementia Care Coordinators, who were certified as Options Counselors and received training on dementia and caregiving, dementia symptoms and best practice management methods, as well as services and resources available through the Aging Network and the University of Virginia Health System.
The program enrolled individuals who had received a dementia diagnosis, largely receiving referrals from the Memory and Aging Care Clinic. Upon enrolling in the program, each participant received a home visit, which allowed Care Coordinators to assess the client’s home environment, better understand their needs and develop relationships with them and their families. While Care Coordinators initially provided home visits only to individuals who lived within a 90-minute drive of Charlottesville, program directors quickly realized that the home visit was a vital component of the program and expanded home visits to all clients regardless of distance.
Dementia Care Coordinators also provided individuals and their caregivers with a starter packet of resources and connected them to services and supports. They held monthly check-in calls with program participants and conducted annual follow-up home visits to collect outcomes data and measures of satisfaction. The program developed a checklist for the monthly calls that included questions on changes in sleep, behavior, appetite and other issues that might suggest a need to return to the clinic or contact a health care provider. If it was recommended that individuals living with dementia return to the clinic, the Dementia Care Coordinators attended these clinic visits to support the individual.
Follow-up reports indicate that the program resulted in positive outcomes for individuals living with dementia and caregivers who participated in the program. After a one-year follow-up consultation, staff reported that rates of depression significantly improved for both participants with dementia and their caregivers. Caregivers also reported significantly lower caregiver burdens, and that participants had significantly fewer behavioral symptoms at the follow-up visit. Program leaders are currently exploring ways to sustain the program. In 2019, Virginia’s General Assembly considered a bill, which was not passed, that would have funded two Dementia Care Coordinators to provide the Dementia Care Coordination Program.
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