title: 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.
authors.affiliation: University of North Carolina at Chapel Hill, Chapel Hill, NC, USA lauren_cohen@unc.edu.
authors.forename: Lauren W
authors.initials: LW
authors.lastname: Cohen
authors.affiliation: University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
authors.forename: Sheryl
authors.initials: S
authors.lastname: Zimmerman
authors.affiliation: University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
authors.forename: David
authors.initials: D
authors.lastname: Reed
authors.affiliation: University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
authors.forename: Philip D
authors.initials: PD
authors.lastname: Sloane
authors.affiliation: University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
authors.forename: Anna S
authors.initials: AS
authors.lastname: Beeber
authors.affiliation: University of Georgia, Athens, GA, USA.
authors.forename: Tiffany
authors.initials: T
authors.lastname: Washington
authors.affiliation: University of Maryland, Baltimore, Baltimore, MD, USA.
authors.forename: John G
authors.initials: JG
authors.lastname: Cagle
authors.affiliation: Duke University, Durham, NC, USA.
authors.forename: Lisa P
authors.initials: LP
authors.lastname: Gwyther
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D003704:Dementia / Q000523:psychology*; D005190:Family; D005192:Family Health; D005260:Female; D006707:Homes for the Aged / Q000706:statistics & numerical data*; D006801:Humans; D007398:Interpersonal Relations; D008134:Long-Term Care / Q000379:methods / Q000523:psychology; D008297:Male; D009735:Nursing Homes / Q000706:statistics & numerical data*; D014789:Visitors to Patients / Q000523:psychology
keywords: burden; dementia; family caregiver; involvement; long-term care