Family involvement in decision making for people with dementia in residential aged care

Abstract

Aim. Ensuring older adults' involvement in their care is accepted as good practice and is vital, particularly for people with dementia, whose care and treatment needs change considerably over the course of the illness. However, involving family members in decision making on people's behalf is still practically difficult for staff and family. The aim of this review was to identify and appraise the existing quantitative evidence about family involvement in decision making for people with dementia living in residential aged care.Methods. This Joanna Briggs Institute (JBI) meta-synthesis assessed studies that investigated involvement of family members in decision making for people with dementia in residential aged care settings. Whilst quantitative and qualitative studies were included in the review, this paper presents the quantitative findings. A comprehensive search of 15 electronic databases was performed. The search was limited to papers published in English, from 1990 to 2013. Twenty six studies were identified as being relevant; ten were quantitative, with one mixed-method study. Two independent reviewers assessed the studies for methodological validity and extracted the data using the JBI Meta Analysis of Statistics Assessment and Review Instrument (JBIMAStARI). The findings were synthesised and presented in narrative form. Conclusions.The results identified patterns within and variables associated with surrogate decision making, which all highlight the complexity and variation regarding family involvement.Attention needs to be paid to supporting family members in decision making in collaboration with staff. Word count: 269Keywords: decision making; dementia; family; residential aged care; systematic review Care Home Minimum Standards make frequent reference to "residents and their representatives" being informed, consulted, and involved in decision making and care planning, among other decisions in the facility. 8,9 In the United States, the Federal Requirements for Long Term Care Facilities 9 commonly makes reference to "the resident or their representative", the "legal representative", or "family member" in regard to information, consent, and care planning. Other countries similarly, both implicitly and explicitly, refer to representatives, including family, being informed and involved in planning and decision making. However, the enactment of these standards is not consistent across contexts.There have also been attempts to develop best practice approaches to involving family members in the care of older people in residential care. In Australia, for example, participation of family members in the care of older people is also highlighted in the Palliative ApproachGuidelines for RAC and Community. 10,11 Further, the recent development of consumer focused documents in Australia which highlight the role of family members and proxy decision makers in contributing to care decisions for planning for end of life with dementia is a good example of the growing policy context which supports the involvemen...

A Synthesis Of Knowledge About Caregiver Decision Making Finds Gaps In Support For Those Who Care For Aging Loved Ones

“…Unlike other reviews of involvement of caregivers in decision making, [26][27][28] ours focused on caregivers of seniors with varying degrees of cognitive impairment, included all relevant articles published before June 2015, and was not restricted to English-language studies. Furthermore, we triangulated quantitative and qualitative literature, using qualitative findings to enrich quantitative ones.…”

Decision aids to support decision-making in dementia care: a systematic review

“…Several reviews focussed on decision making processes within dementia care itself, including the involvement of people with dementia and/or caregivers in the decision making process (Miller et al, 2016, Petriwskyj et al, 2014 and their needs (Barker et al, 2017). No review has evaluated decision making interventions with decision aids in dementia care.…”

Providing support to surrogate decision-makers for people living with dementia: Healthcare professional, organisational and community responsibilities

“…Offering early discussion around advance care planning (Kelly et al, 2012;Philipsen, Murray, Wood, Bell-Hawkins, & Setlow, 2013;Sinclair, Oyebode, & Glynn, 2016) is critical. Especially relevant considerations when supporting surrogate decision-makers of a person living with dementia are offering clear explanations of the likely progress and prognosis of dementia, including end of life (Arcand, 2015;Givens et al, 2009;Livingston et al, 2010), and providing for ongoing discussions and care planning with surrogate decision-makers as circumstances change (Petriwskyj et al, 2014;Wackerbarth, 1999).…”

“…The prevalence of dementia is increasing worldwide, particularly in industrialised countries (Ducharme, Couture, & Lamontagne, 2012;Lord, Livingston, & Cooper, 2015). A central feature of dementia is the gradual loss of decision-making capacity and the need for other people to be involved in decisions affecting the person living with dementia (Petriwskyj et al, 2014;Rid & Wendler, 2010). The experience for most people with dementia is that another person does not normally take on the role of making decisions for them overnight.…”