Measuring caregiver activation for health care: Validation of PBH-LCI:D

Improving the quality of health care for individuals living with dementia is a central goal of the National Alzheimer's Plan, and requires the participation of informed family caregivers as active members of the patient's health care team. “Caregiver activation” is an emerging concept for which dementia-specific measures are lacking. We developed and validated a new self-report index of caregiver activation, Partnering for Better Health – Living with Chronic Illness: Dementia (PBH-LCI:D). PBH-LCI:D has high content validity and good internal consistency and test-retest reliability, with 32 items and a strong six-factor structure reflecting all major health care domains of dementia caregiving. Comparisons with measures of related constructs and potential caregiver and patient predictors of activation indicate that PBH-LCI:D measures a unique construct and therefore should be useful as a marker of caregiver needs for education and behavioral change coaching, and as the foundation for developing interventions to enhance caregiver activation and successful partnership with clinicians.