Toward assessment of dementia caregiver activation for health care: An integrative review of related constructs and measures

The purpose of this integrative literature review was to establish the rationale for a new measure of dementia caregiver activation for health care. Little is known about how caregivers form working partnerships with clinicians to manage the health of individuals who, because of cognitive impairment and functional limitations, can no longer actively manage their own health. Building on three sources-the construct of patient activation, an empirical health care framework for individuals living with dementia, and a set of dementia care quality indicators-the construct of dementia caregiver activation for health care was defined and initial relevant domains were specified. An integrative literature review was performed to identify related constructs and assess currently available measures with respect to their inclusion of these key health care domains. Using Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, 647 citations were reviewed and reduced to 17 studies, which were included in the analysis and qualitative synthesis. No existing measure was found that captures all of the domains required for caregiver-clinician partnership, establishing the need for a novel measure of caregiver activation focused on the health care of individuals living with dementia.