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? Background The involvement of people in decisions about their care is recognised as both good practice, and as important in ensuring optimal outcomes. Particularly in the nursing literature, focus has been placed on the care recipient's role in planning and decision making around their own care in residential, hospital or community settings.1–4 Such discussions are tied to fostering empowerment, and the role of health and social care workers in contributing to the ability of older people to retain ‘voice’ and control over their lives.5 This discussion has also been extended specifically to people with dementia, centring on notions of personhood, citizenship, and the importance of autonomy, choice and control.6–8 Dementia describes a group of disorders affecting the brain that produce a collection of symptoms relating to language, perception, cognitive skills and memory. 9 There are many different forms of dementia, the most common of which are Alzheimer's disease, Vascular dementia, Parkinson's disease, Dementia with Lewy bodies, FrontoTemporal Lobar Degeneration (FTLD), Huntington's disease, Alcohol related dementia (Korsakoff's syndrome) and Creutzfeldt-Jacob disease; however typically the conditions associated with dementia are progressive, with functioning gradually decreasing over time.10 For the purpose of this review, the term dementia refers to any and all forms, and any stage of the disease progression. In the later stages of dementia fulfilling this becomes increasingly challenging without the involvement of proxies who act in the interests of the person with dementia (PWD). These people (often family members) are considered to be in the best position to work alongside care staff and the person with dementia to ensure the PWD's wishes are followed in decision making and care. It must be noted that there is some debate regarding family members' ability to correctly identify the wishes of the person receiving care.11–12 However, whether they are considered representatives of the PWD or whether they are part of a decision making team, these family proxies are considered an important part of the care dynamic, and considerable attention has been given to their role in care and their relationships with paid care providers.13–17 The involvement of care recipients and their families in decisions and long term planning is also required under the Australian aged care accreditation standards18 and the guidelines for care for people with dementia developed from these standards by Alzheimer's Australia.19 The decisions in which family members or other surrogate decision makers are involved are diverse. Medical decisions may concern, for example, feeding problems, infections, pain, dyspnea, behaviour problems, hospitalisations, co-morbid conditions such as cancer, and other complications.20 Decision making may relate to care planning rather than immediate concerns, 21 may relate to specific stages such as end-of-life care,22,23 or may relate to leisure and lifestyle choices.24 In the context of this review, decision making includes each of these areas of decision-making; however, decisions relating to whether to enter residential care, which occur outside the residential care environment, and decisions regarding financial issues, which do not relate to physical, psychosocial, spiritual and emotional domains of care, will not be addressed. A range of issues make surrogate decision making in residential care complex. For example, who makes decisions and how authority is delegated is a key issue in care for people with cognitive impairment. Both formal and informal processes can be involved. In their cross-sectional study investigating the process of advance care planning and the prevalence of advance care directives in residential care, Nair et al found very low levels of formal advance directives, with less than 6 per cent of those studied having a formal guardian and less than three per cent having an enduring guardian. Informal processes of advance planning were much more prevalent, with sixty-five per cent having a ‘person responsible’ recorded. However, in 10.6 per cent there was no clear process for decision making. 25 Decision making authority may be assumed in different ways, often through family agreement, but also through delegation by the person with dementia themselves or, in some cases, self-assumed rather than chosen by the older person or the family.22 Both formal and informal processes also influence how surrogate decision-makers arrive at decisions for their relative.23 However, surrogates may not have specific information about their relative's preferences, having instead only general preferences such as use of life support.23 Indeed, a range of factors may determine whether, when and how people convey their preferences for decisions such as end-of-life care. Family surrogates may rather use their knowledge of their relative's life “story” to make judgements on what the patient would have preferred.22 The decision making process itself is thus complex. Given this, it is perhaps not surprising that family members' experiences of decision-making can vary. For example, while Dijkstra suggested that families did indeed have an active role in planning, not all family members felt they had sufficient influence in the final outcome. For those who did not, concerns about the implementation of care plans were common. 21 Similarly mixed findings were reported by Givens et al; while the health care proxies of nursing home residents with advanced dementia expressed high overall satisfaction, some dissatisfaction was evident, much of which was attributed to lack of adequate support from care providers, as well as the degree of comfort experienced by the care resident and whether the resident was receiving care in a special care dementia unit.20 The interface between staff and family is frequently highlighted in such studies and staff-family communication and relationships are indeed important in order to facilitate family carer involvement in decision-making.26 This in turn impacts on outcomes for the patient. For example, the relationship with staff facilitates staff members' understanding of the patient's life “story”, a key aspect of decision-making that respects the patient's autonomy.22 Shared decision-making involving family members has also been found to be one of the features of nursing home culture associated with lower rates of tube feeding. 27 Arrangements which facilitate the engagement of these family members in knowledge sharing and in key care decisions are therefore considered both an ethical imperative, and an important part of ensuring appropriate, high quality care is provided. The ways in which residential aged care facilities engage with family members and facilitate their participation in decision making thus have important implications for the provision of care. However, despite a considerable history of research attention to aspects of this issue such as staff- family relationships13, in practice family involvement in decision making can be challenging for care staff and families alike. It is therefore important to build our knowledge base surrounding this issue in order to continue to improve outcomes for people with dementia and their families. To our knowledge, no existing Cochrane Library or Joanna Briggs Institute systematic reviews address this topic. 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. Types of studies The quantitative component of the review will consider both experimental and descriptive study designs including randomised controlled trials, non-randomised controlled trials, quasi-experimental, before and after studies, prospective and retrospective cohort studies and cross sectional studies for inclusion. The qualitative component of the review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research. The review will exclude studies reported in languages other than English. Search strategy The search strategy aims to find both published and unpublished studies. A three-step search strategy will be utilised in this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe the article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference list of all identified reports and articles will be searched for additional studies. Studies published in English will be considered for inclusion in this review. Studies published in or after 1990 will be considered for inclusion in this review. The databases to be searched include: CINAHL PsycInfo ISI Web of Science PubMed Embase APAIS-Health Ebsco Health Source Sociological Abstracts Proquest Digital Dissertations PsycArticles Proquest academic research library The search for unpublished studies will include: PsycEXTRA Google Scholar WorldWideScience Mednar (excluding Google Scholar) CareSearch Initial keywords to be used will be: Setting: residential facility OR residential care OR nursing home OR aged care home OR long term care OR home for the aged OR residential aged care OR elderly care OR aged care facility OR care home Population: elderly OR frail elderly OR aged OR older adult OR older person OR older people OR care resident* OR resident* OR elder* dementia OR alzheimer* OR dement* OR alzheimer* disease OR cognitive impairment OR diminished capacity OR dementia, multi-infarct OR dementia, vascular OR impaired capacity OR Creutzfeldt-Jakob Syndrome OR Lewy Body Disease OR Wernicke* OR Korsakoff* OR Huntington* OR Progressive Supranuclear Palsy OR Pick's Disease OR Binswanger* family OR proxy OR family proxy OR spous* OR child OR daughter OR son OR relative OR partner OR surrogate Phenomena of interest: decision* OR decision-making OR plan* OR advance care planning OR advance care plan OR advance health directive OR advance directive OR care plan OR collaborative decision making involve* OR engage* OR participat* OR collaborat* OR includ* OR inclus* Assessment of methodological quality Quantitative papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardised critical appraisal instruments from the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI) (Appendix I). Qualitative papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardised critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer. Data collection Quantitative data will be extracted from papers included in the review using the standardised data extraction tool from JBI-MAStARI (Appendix II). The data extracted will include specific details about the interventions, populations, study methods and outcomes of significance to the review question and specific objectives. Qualitative data will be extracted from papers included in the review using the standardised data extraction tool from JBI-QARI (Appendix II). The data extracted will include specific details about the interventions, populations, study methods and outcomes of significance to the review question and specific objectives. Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer Data synthesis Quantitative papers will, where possible, be pooled in statistical meta-analysis using JBI-MAStARI. All results will be subject to double data entry. Effect sizes expressed as odds ratio (for categorical data) and weighted mean differences (for continuous data) and their 95% confidence intervals will be calculated for analysis. Heterogeneity will be assessed statistically using the standard Chi-square and also explored using subgroup analyses based on the different quantitative study designs included in this review. Where statistical pooling is not possible the findings will be presented in narrative form including tables and figures to aid in data presentation where appropriate. Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality, and categorising these findings on the basis of similarity in meaning. These categories will then be subjected to a meta-synthesis in order to produce a single comprehensive set of synthesised findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible the findings will be presented in narrative form. Conflicts of interest None Acknowledgements The review is funded by the University of Tasmania and the University of Queensland.