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

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.

Interventions promoting family involvement with care homes following placement of a relative with dementia: A systematic review

“…This idea should be treated with caution; many family, organisational and resident factors influence family contact ( Hayward et al, 2021 ) and are consequently likely to impact related resident outcomes. Quality of time spent may be more important (see Mbakile-Mahlanza et al 2020 ).…”

“…New research would benefit from focussed exploration of the factors that influence family involvement raised in ( Hayward et al, 2021 ) to determine which and if any, account for inter-family and inter-care home variation in family involvement. The learnings from this could then be incorporated into design of family involvement interventions.…”

“…This review and a second paper in the series ( Hayward et al, 2021 ) provide a comprehensive view of family involvement: a proposed new definition, types, factors that influence, the process, relationship to person and family-centred care principles, measures of involvement, how family involvement is being promoted in care homes, the impact of involvement on residents wellbeing and finally recommendations for development of future interventions. This series and Backhaus et al (2020) significantly move the dementia-specific, family involvement with care homes, evidence base forward.…”

“…Family involvement is defined as a multidimensional construct that can entail visiting, advocacy, supervising, monitoring and evaluating care, development of care partnerships and foundation care: personal, instrumental, preservative and psychosocial ( Hayward et al, 2021 ).…”

Factors associated with formal and informal resource utilization in nursing home patients with and without dementia: cross-sectional analyses from the COSMOS trial

“…Most NH patients in Norway have cognitive impairment and more than 80% meet the diagnostic criteria for dementia [9]. Even when under formal care, the support and attention by family members is still crucial to safeguard the person's autonomy, quality of life (QoL), and care [10]. A quasi-experimental study from the Netherlands (2005) demonstrates the supportive value of relatives in activities of daily living (ADL) such as personal hygiene and food intake [11].…”