Family members are involved in the lives of older adults with dementia in complex ways. This scoping review synthesizes existing research on family involvement in the care of nursing home residents with advanced dementia. Using the Arksey and O'Malley scoping review framework, electronic searches of PubMed, EBSCO's CINAHL Complete, and APA PsychInfo on the Ovid platform were conducted. Twenty-eight studies met inclusion criteria. Emergent themes and definitions of involvement were obtained through thematic analysis, including: (1) contact (through visitation, calling, or writing letters); (2) engagement in care activities (instrumental/activities of daily living); (3) planning and monitoring care (being aware of health and treatment changes, partnership with care staff, ensuring adequate care, and decision-making); and (4) supporting the resident (advocacy, socioemotional support, and financial support). Moreover, limited psychometrically sound instruments exist to measure family involvement. These limitations stall the progression of research targeting family involvement.
Keywords: dementia; family caregiving; family involvement; nursing home residents.