Dementia in Relation to Family Caregiver Involvement and Burden in Long-Term Care

Abstract

To better understand the process and outcomes of family involvement for long-term care residents with varying stages of dementia, we analyzed family and staff data for 467 residents of 24 residential care/assisted living and nursing-home settings. Adjusted analyses found that although the amount of family visitation did not significantly vary by resident cognitive status (15 versus 20 visits/month to persons with and without dementia, respectively), the nature of the visit did. Families of cognitively intact residents spent more time in activities related to social and community engagement, such as taking residents on trips and calling and writing letters (p < .001), while families of more impaired residents spent more time on care-related activities, including tasks related to nutrition (p < .027), mobility (p = .001), and discussing care with staff (p = .007), the latter of which was associated with greater burden (p < .001). Staff identified similar patterns but perceived less family involvement.