Family involvement in decision making for people with dementia in residential aged care: a systematic review of quantitative and qualitative evidence

Abstract

Review question/objective The qualitative and quantitative objective of this review is to scope the extant knowledge about family involvement in decision making for people with dementia living in residential aged care. More specifically, the review question/s are: •Who are the decision makers for people with dementia living in residential care? •What is the experience of decision making for family members in the residential care setting? •What are the barriers or facilitators to decision making by families? •What is the impact of decision making processes on family members? •What is the impact of collaborative decision making with family on the person with dementia? • What processes or strategies do family decision-makers use? Inclusion criteria Types of participants This review will consider studies that include people with dementia who are living in residential aged care, their families and care staff. For the purpose of this review, the definition of “dementia” is not restricted to any specific diagnosis, stage or degree of severity. There is no age limit on participants included, provided they are living in residential aged care. Care staff may include any and all types of staff involved in providing care to people with dementia in residential aged care, including but not limited to nursing staff, medical staff and direct care staff. Types of intervention(s)/phenomena of interest This review will consider both quantitative and qualitative studies that investigate involvement of family members in decision making for people with dementia in a residential aged care setting. For this systematic review, decision making for people with dementia in a residential aged care setting refers to decisions relating to the physical, psychosocial, spiritual and emotional domains of care, for example decisions relating to advance care planning, decisions regarding clinical care, decisions regarding end-of-life care, and decisions regarding leisure and lifestyle. Types of outcomes This review will consider studies that investigate or discuss who the decision makers are in care for people with dementia and how decisions are made, what processes assist families in decision making and what are the barriers or facilitators to collaborative decision making by families, as well as the impact of decision making processes on family members and the impact of collaborative decision making with family on the person with dementia. The review will explicitly exclude studies that are solely concerned with decisions about whether to enter residential aged care or decisions regarding financial issues; however where this data forms part of a larger study, the study may be included but this data will not be extracted.