Families caring for assisted living and nursing home residents with dementia: Does setting matter?

While family caregivers are recognized as playing an important role in the provision of care and oversight of residents in assisted living (AL) and nursing home/long-term care (LTC), the diversity in patterns of family engagement and caregiver well-being across the two settings is not well understood. Given potential differences in the availability/type of staffing and in the residents’ cognitive/physical functioning, families of AL residents with dementia may be more involved and more burdened than those caring for LTC residents.

Drawing on a longitudinal study conducted in the Canadian province of Alberta, the extent of family engagement and caregiver well-being in both AL and LTC settings are examined, taking resident and facility characteristics into account. Comprehensive baseline and 1-year follow-up assessments were conducted on 1,089 residents of 59 (designated) AL facilities and a stratified, two-stage random sample of 1,000 residents within 54 LTC facilities. A total of 627 AL and 708 LTC residents had a documented diagnosis of dementia. In-person interviews were completed with 974 AL family caregivers and 917 LTC family caregivers at baseline, with 1-year follow-ups completed where possible. Among these caregivers, 582 of the AL caregivers and 650 of the LTC caregivers were caring for a resident with dementia.

Family engagement was measured with a series of questions related to visiting, caregiving tasks, perceived involvement in the life of the facility, and financial costs to caregivers and/or residents. Caregiver well-being was assessed by the Caregiver Reaction Scale (CRA) (Given et al., 1992) that examines five domains (disrupted schedules, financial problems, lack of family support, health problems, and the impact of caregiving of the caregiver’s self-esteem). 

The results revealed both similarities and differences in family engagement and caregiver well-being across the two settings, highlighting the complexity in care arrangements. Implications for future research are discussed.