Successes and Challenges of Sustaining Community-Based Programs for People Who Live Alone with Dementia

TL;DR

This study examines the successes and challenges of sustaining community-based programs for people living alone with dementia after federal funding ends.

Contribution

The paper provides insights into strategies and challenges for sustaining dementia care services post-grant funding.

Findings

Grantees used strategies like service modification and partnerships to sustain programs for people living alone with dementia.

Common challenges include the lack of local care partners and the need for specialized services after initial funding ends.

Care management, monitoring, and socialization are critical for supporting people living alone with dementia.

Abstract

Approximately a quarter of older adults with dementia or cognitive impairment live alone in the US. To address the needs of people living alone with dementia (PLAWD), the Administration for Community Living requires PLAWD-focused services in its Alzheimer’s Disease Program Initiative (ADPI) to address service gaps and improve care delivery for PLAWD. We examined 59 ADPI grants to determine the types of services delivered, and successes and challenges faced in service delivery. Grantees provided care management and/or delivered services such as companionship and support for socialization through buddy programs, phone calls, social and wellness programming, and regular home visits. This study explores the post-grant period experiences of community-based organizations that received federal funding. The study team conducted semi-structured, online interviews with 13 of the 59 grant program directors representing multiple regions of the US. Interviews were audio/video-recorded, transcribed, and manually coded by team members using an inductive approach to identify key themes. Findings highlight the factors that impacted the long-term sustainability of PLAWD-focused services after federal funding ceased. Grantees implemented strategies to maintain and expand services including modifying services, partnering with local service providers and leveraging existing relationships. Findings demonstrate that a variety of services have been successfully sustained for PLAWD. However, common challenges are experienced in sustaining service delivery after initial grant funding ends. PLAWD often lack local care partners and need specialized services and support, including care management, care monitoring, and socialization. Different approaches used and challenges faced in sustaining grant-initiated community programs for PLAWD are discussed.