Family involvement with care homes following placement of a relative living with dementia: a review

Abstract

Abstract This review updated a previous review [Gaugler JE (2005) Family involvement in residential long-term care: a synthesis and critical review. Aging and Mental Health9, 105–118] and focused on dementia. Fourteen years of development in family involvement with care homes following placement of a relative was explored. The review aimed to investigate two questions: (1) What types of involvement do families have with care homes following placement of people living with dementia? (2) Which factors influence family involvement with care homes? PsycINFO, MEDLINE and CINAHL Plus were searched for publications between January 2005 and December 2018. Thirty-three papers representing 30 studies were included. Papers were appraised using a quality rating tool designed for use with mixed study designs. Studies were of a reasonable quality though some weaknesses included single-site samples, high attrition rates and poor reporting. Twenty-eight papers highlighted types of involvement including collaboration, family–staff relationship development, decision making and visiting. Twenty-five papers pertained to factors influencing involvement, which included outcome of care quality evaluation, wish for recognition and sense of integration into the care team. Type of family involvement has changed over time with increased emphasis on families’ desire for partnership, to be active rather than passive advocates, and to focus on care monitoring and evaluation. Seven themes of family involvement activities are featured and a non-linear process is proposed. When compared to patient and family-centred care principles, an analysis of family involvement types found good fit overall and potential for framework improvements. Over 30 diverse factors influence inter-family variation in the level and nature of family involvement. Consideration of these factors and resolution of the gaps in evidence, including intergenerational and cultural concerns, can improve care home facilitation of family participation. This dementia-specific review is a comprehensive timely complement to Gaugler's seminal work about older adults in care.