Abstract
Health care providers recognize that family can directly and indirectly affect adult patient health and reduce costs to healthcare systems. However, there is no consensus on the best practices for integrating caregivers into the healthcare experience. Research on how healthcare providers can integrate family abilities and values into patient plans of care for disease management, rehabilitation, or symptom control lags far behind the research on patient-centered care. Research on family engagement at critical points of patient care, such as hospital discharge or end-of-life decision making have been instrumental in highlighting opportunities to engage families to improve quality of care. Far less research has been done on integrating family values, capabilities, and capacity to care throughout a patient’s chronic disease continuum, leaving healthcare providers with few evidence-based, feasible or acceptable strategies they can offer to caregivers to improve patient outcomes and maintain their caregiver health. Using qualitative data from six focus groups with family caregivers of people with dementia and one focus group of people living with mild cognitive impairment, we identified potential “best practices” on engaging family caregivers in healthcare. Caregivers and patients reported clinical best practices would include coordination of services, personalized care, practices that enabled caregivers to provide optimal care (early identification of caregivers and routine assessment of caregiver health and capacity to care), and compassion and respect for the caregiver role and expertise. Data have been used to inform a new quantitative assessment to evaluate clinical best practices for engaging family caregivers.