Assessing needs and goals of dementia caregivers: development of the COPE-ING measure

BACKGROUND: Supportive interventions and outcome measures for caregivers typically focus on alleviating and evaluating negative psychosocial dimensions of caregiving. Caregiver instruments that focus narrowly on measuring and evaluating burden, strain, depression and anxiety may overlook a given caregiver's individual needs and goals. There is an urgent need to develop psychometrically sound tools that capture caregivers' unique needs and priorities. This study examines the psychometric properties of the novel Caregiver Outcomes of Psychotherapy Evaluation-Individualized Needs and Goals (COPE-ING) measure, designed to identify priorities and goals of dementia caregivers beyond burden to a more personalized, meaningful approach. METHODS: After initial refinement of items with dementia caregivers and professionals (N = 52), the 15-item COPE-ING was administered to 100 dementia caregivers along with a range of psychosocial and dementia severity measures. We evaluated internal consistency and 2-week test-retest reliability, as well as convergent validity with caring burden, anxiety, and depression. RESULTS: Various needs were important to caregivers, suggesting that the COPE-ING taps a broad range of relevant caregiver goals. Subscales capturing needs for education and pragmatic support had modest correlations with existing caregiver burden measures, but demographic factors and caregiver burden explained less than 20% of the variance of caregivers' needs and goals. CONCLUSIONS: Dementia caregivers are a heterogeneous group with varied needs and goals. Our initial study suggests that the COPE-ING tool can be a means of addressing critical gaps in caregiver research and practice by offering a psychometrically sound measure to quickly identify individualized caregiver needs and goals. The COPE-ING measure is a practical instrument for capturing these needs and goals of dementia caregivers in clinical and research settings.