Gatekeepers: The Association of Caregiving Network Characteristics With Emergency Department Use by Persons Living With Dementia.

Abstract

Caregivers are typically enmeshed in networks of family and friends who assist with care, yet this network is largely neglected in research. In light of the fact that caregivers are key medical decision makers and play a critical role in how persons living with dementia (PLwDs) interface with the health care system, this study explores how features of the caregiver network relate to PLwD emergency department (ED) use. Using 2015 National Health and Aging Trends Study data linked with fee-for-service Medicare claims, we examine ED use in a nationally representative sample of community-dwelling persons aged 65 and older with dementia and at least 1 caregiver. We consider aspects of the caregiver network including membership (e.g., daughter in network), network size, hours of care received, and the presence of generalists and specialists (i.e., broad vs narrow functional assistance) as predictors of ED encounters among PLwD. PLwDs were 81.5 years old on average, 50% were female, and 33% were non-White. Care networks including nonimmediate family members involved in task sharing for mobility and self-care difficulties and those with more generalists had significantly higher odds of an ED visit. Networks that only consisted of specialist caregivers had significantly lower odds of an ED visit. Greater complexity of care networks increases risk of presenting to the ED for care. Better understanding how caregiving networks help PLwD interact with the health care system can inform intervention design and targeting in order to help care networks improve care coordination, management, and shared decision making.