P3‐328: Managing Your Loved One’S Health: Development of a New Care Management Measure for Dementia Family Caregivers

The National Alzheimer’s Plan calls for improving the healthcare of individuals living with dementia and supporting their caregivers as capable health care partners. Family members and friends implement health care plans for dementia patients at home, but often do so at the expense of their own health, and without explicit training or support from clinicians. Clinically useful tools are needed to assess and monitor caregivers’ readiness, knowledge, and skills for managing the often-complex health care needs of individuals with dementia and simultaneous, sustained self-care. We created and validated a comprehensive, caregiver-centered measure, Managing Your Loved One’s Health (MYLOH). In this paper, we describe its development and preliminary cultural tailoring. We utilized a rigorous multi-phase instrument development method consisting of literature review, Iterative concept elicitation interviews with experts (N=16) and caregivers (N=35), cognitive interview focus groups with experts (N=5) and caregivers (N=15), psychometric validation with caregivers (N=130), and tailoring for cultural equivalence of the resulting instrument with African American (N=26) and Hispanic (N=14) caregivers. Expert providers and family caregivers endorsed a core set of domains related to the healthcare management of care recipients with dementia and to personal self-care. The resulting measure, MYLOH, is a questionnaire containing 29 items (21 knowledge and 8 skills) grouped into 6 domains, rated using a 5-level response scale ranging from (1) ‘Disagree Completely’ to (4) ‘Agree Completely’ and (0), ‘Not my responsibility.’ Scores can range from 0-116, with lower scores suggesting the need for caregiver coaching. MYLOH has a 6 grade reading level and requires less than 20 minutes to complete when administered as paper and pencil caregiver self-report. This questionnaire is valid and reliable and appears to be relevant to both clinicians and ethnoculturally diverse caregivers. MYLOH is a suitable instrument for testing in a variety of settings. It can be used as a guide for conversations between clinicians and caregivers around health care management of people living with dementia and attending to their own self-care, as the basis for targeted health care coaching, and as an outcome measure in comprehensive dementia care management interventions.