Stakeholder Perspectives on Policies to Support Family Caregivers of Older Adults With Dementia

Abstract

Persons with dementia are often excluded from consumer-directed home- and community-based service programs because they cannot direct their own care. Surrogates are permitted in some states, thereby allowing program participation. This study explored family caregiver perspectives on policies that support family needs related to providing care to relatives with dementia, access to home- and community-based services, and the potential benefits of a consumer-directed service model. The authors conducted three focus groups with family caregivers (N = 25) in eastern Missouri who were recruited through support groups and service providers. Family caregivers reported difficulty in acquiring services, high levels of psychological and physical stress, greater need for caregiving supports, and a desire for public policy change to support caregiving families. Caregivers cited differences in knowledge, family relationships, and health and employment circumstances as reasons why they would prefer a traditional case management model, a consumer-directed care model, or a cash and counseling model. Family caregivers suggested that surrogate decision making within consumer-directed care should, at minimum, be an available option. Findings from this study offer initial support for the advancement of family-centered care models in home- and community-based dementia care practices and policies to support the caregiving efforts of families.