Healthcare and Community Organizations Implementing Evidence-Based Dementia Caregiving Programs: Findings from Best Programs for Caregiving.

Abstract

Background and objectives: A major success in implementation science is the delivery of evidence-based dementia support programs for family/friend caregivers by service organizations. Best Programs for Caregiving (BPC) launched in 2020 as an online resource profiling 42 evidence-based programs being delivered as regular services. Data collected in 2018-2019 describes the number, characteristics, and experiences of organizations delivering BPC programs.

Research and design methods: Data came from structured surveys of program developers and organizations delivering BPC programs. Descriptive analyses profile programs and organizations.

Results: In 2018-2019, 350 organizations were reported as implementing 37 BPC programs, serving an estimated 40,000 caregivers and persons living with dementia. Most delivery organizations were healthcare systems (n = 77, 23.8%), AAAs (n = 77, 23.8%), or Alzheimer's/Dementia Associations (n = 39, 12.0%). Eighteen funding sources were used to cover program-delivery costs, which most commonly were the Older Americans Act Title III E (n = 60, 34.3%) and non-ACL grants (n = 49, 28.0%). The most common challenges with delivering programs were marketing (n = 124, 69.8%) and engaging caregivers (n = 118, 66.3%), despite high satisfaction with program training and support.

Discussion and implications: More organizations than previously known were delivering evidence-based BPC programs. Delivery experiences varied widely, with top challenges highlighting the need to increase knowledge of the availability of dementia caregiving support programs. Findings offer benchmarks for assessing the future availability and reach of evidence-based dementia caregiving programs to meet the needs of the increasing number of families caring for individuals living with dementia.