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The Alzheimer's Disease Family Care Center program was established within an intermediate care teaching nursing home as a demonstration program to investigate ways to involve families in care of their relatives. In total, 45 family members participated in a program including an orientation session; a preliminary family involvement interview; contracts with family members, in which they chose specific tasks to engage in during visits; a five-session course on Alzheimer's disease and how families may be partners in care within the facility; and an ongoing family support group. Evaluation data sources include a baseline and 9-month follow-up questionnaire completed by families, preliminary and follow-up family interviews conducted by project codirectors, records of family visits, and family choices on contracts. Findings from the 23 family members who contracted for tasks during their visits and from the follow-up questionnaire completed by 25 family members showed that most sought social and emotional interactions with relatives, some maintained direct personal care activities, and only a few identified interest in extensive involvement with staff and facility. At follow-up, family members involved in the program reported they continued to feel close to their relatives. Many felt that their relatives were generally stable or improved with regard to cognitive function, but over a third noted difficulties in communicating. Participating family members reported that the program of staff supports helped them to feel more integral to the unit. They expressed a need for more education and support for their involvement in the nursing home setting. Project findings confirm previous studies recommending that programming at nursing homes needs to include specific institutional and staff supports to maintain and enhance family contributions to the long-term nursing home care of their relatives.
Linsk et al. (Thu,) studied this question.