Best Practice Caregiving: Guiding Organizations to Dementia Caregiving Programs

By David Bass, Alyssa Ciancibello, Leah Eskenazi, Kathleen Kelly, Katie Maslow and Rachel Schaffer

An estimated 16 million Americans provide care and assistance for nearly 6 million older adults with Alzheimer’s disease or other dementias. Family caregivers for those living with dementia are twice as likely as other family caregivers to report adverse effects of caregiving on their physical and emotional health, employment, finances and family relationships. The 2016 National Academies of Sciences, Engineering and Medicine’s report, Families Caring for an Aging America, emphasized the importance of programs to support family caregivers. Although a major advance in the field has been the development of proven evidence-based programs for dementia caregiving, few healthcare or community-based organizations have adopted any of these programs. As a result, most families are unable to access these proven sources of assistance. A significant barrier to the adoption of these programs is the lack of a single source of accurate comparative information about program characteristics, workforce needed to deliver a program, implementation costs and outcomes. Without this information, healthcare and community-based organizations have difficulty determining which program is most appropriate for their organizations and populations they serve.

As part of the solution, Best Practice Caregiving, housed on Family Caregiver Alliance’s website (caregiver.org), was successfully created and launched in 2019 as a key resource to help professionals learn about nonpharmacological, evidence-based dementia caregiving programs and how to implement them into their organizations. The resource was created through a partnership between Benjamin Rose Institute on Aging and Family Caregiver Alliance along with Katie Maslow of the Gerontological Society of America. The project received funding from The John A. Hartford Foundation, Archstone Foundation, and The RRF Foundation for Aging.

Best Practice Caregiving directly addresses this problem of limited information about the availability of proven programs for family and friend caregivers. Best Practice Caregiving currently profiles 42 evidence-based dementia caregiving programs emphasizing implementation and research characteristics, as well as experiences of organizations who have delivered these programs. Displayed on the online resource is a broad array of programs that can fit the needs of many different types of organizations who serve caregivers. Each program has its own profile that contains a rich array of information about program characteristics, implementation experiences of organizations that have delivered the program, and study characteristics and outcomes that form the program’s evidence-base. Professionals can also filter and compare programs using Best Practice Caregiving to find programs that meet the specific needs of the caregivers they serve such as the need to understand and manage symptoms of dementia or to improve health and wellness. While the resource has a variety of diverse programs, it also highlights the gaps in programs. Although almost half (44%) of the programs have materials available in languages other than English, only a small portion of programs were designed to address the specific needs of caregivers from various ethnic backgrounds (10%) or veteran caregivers (2%). Identifying these gaps can have implications for future programs to help caregivers from diverse communities and aid in the development and adaptation of programs by professionals.

The project team is pleased to showcase Best Practice Caregiving at the upcoming Aging in America Conference in Atlanta. Join us on Tuesday, March 24 from 10-11:30 a.m. for “Best Practice Caregiving: Guiding Organizations to Dementia Caregiving Programs” in the Hyatt Regency Atlanta -Regency Vll ( Lower Level 1) to learn more.

David Bass, PhD, is Senior Vice President at the Center for Research and Education, Benjamin Rose Institute on Aging. Alyssa Ciancibello, MPH, is a Research Analyst at the Benjamin Rose Institute on Aging. Leah Eskenazi, MSW, is the Director of Operations at Family Caregiver Alliance. Kathleen Kelly, MPA, is Executive Director at Family Caregiver Alliance. Katie Maslow, MSW, is a Visiting Scholar at the Gerontological Society of America. Rachel Schaffer, MPH, is a Research Analyst at the Benjamin Rose Institute on Aging. Sara Powers, PhD, is a Research Scientist at the Benjamin Rose Institute on Aging. 

Resources

Visit the Best Practice Caregiving site

Check out a webinar recording featuring a walk through of Best Practice Caregiving (Please note that registration is required to view the recording.)

Read an article about Best Practice Caregiving