The nature of decision-making in people living with dementia: a systematic review

Abstract

1 Objective: The objectives of this systematic review were to: 1) understand how people 2 living with dementia are involved in making decisions; 2) explore the different 3 decisional styles and domains of decision-making that people living with dementia 4 experience and 3) identify what influences the level of decisional involvement of 5 people living with dementia.6 Methods: A systematic review of literature identified studies from Medline, PsycINFO, 7 HAPI and CINAHL databases. Search terms related to decision-making and dementia. 8 Qualitative and quantitative research designs were included. Appraisal of included 9 studies was done using quality ratings. All studies focused on how decision-making 10 took place. Extracted findings were synthesised narratively with concept mapping, 11 conceptualisation and an exploration of connections between studies to develop an 12 overall model of decision-making involvement 13 Results: Fifteen studies fully met the eligibility criteria (thirteen qualitative and two 14 quantitative). All studies had moderate (n=10) to high (n=5) quality ratings. 15 Participants were predominantly people living with dementia (n=13), Parkinson's 16 disease and stroke. The model of decision-making encompasses four decisional styles 17 (managed autonomy, and delegated) determined by different degrees of involvement 18 from the person living with dementia and their supporter. The decisional style 19 implemented is influenced by the presence or absence of background (the Freedom of 20 Choice framework) and contextual factors (risk, relationships and resources).21 Conclusion: Decision-making in dementia is complex and influenced by many factors 22 beyond cognitive impairment alone. This review indicates that decision-making in 23 dementia takes place through decisional styles, determined by unique levels of 24 involvement from people living with dementia and their carers.25

The relation between cognitive impairment severity and postural stability in the elderly

“…Agrawal et al [11] have demonstrated that spatial cognitive skills deteriorate with age, which leads to the impairment of the vestibular system. Moreover, the decisionmaking processes are also disturbed; thus, older people with cognitive impairment may be prone to selecting inappropriate strategies for maintaining balance [12]. it seems that the increased risk of falls in this population is a very complex problem.…”

<p>“Who to Tell, How and When?”: Development and Preliminary Feasibility of an Empowerment Intervention for People Living with Dementia Who are Fearful of Disclosing Their Diagnosis</p>

“…[for the person living with dementia] to have a friendly face for the first session". Similar to the systematic review findings, 16 several respondents spoke to the importance of including carers ("shared experiences make it easier and stop the feelings of isolation. Carers should also attend").…”

“…Existing HOP literature was collated and summarized to formulate a theory of change based on the empirical evidence presented in randomized controlled trials (RCTs) and cross-sectional studies. A recent systematic review 16 was used to identify key features of decisionmaking processes for people living with dementia and understand how disclosure decision-making may take place in dementia.…”

“…24 RCTs suggest HOP is related to reductions in stress caused by stigma, 23,24 reductions in self-stigma, 14,24 decreased disclosure-related distress and perceived levels of secrecy, 23,24 and an increase in intentions to seek help from family/friends and professionals. 23 The Nature of Decision-Making in Dementia: A Systematic Review A published systematic review into the nature of decisionmaking in dementia 16 provided two vital points for consideration when adapting HOP for dementia. First, in order to create a meaningful decision-making environment for people living with dementia the Freedom of Choice factors (being informed, being listened to, ability to express opinions, time for reflection, and reversibility of choice) must be upheld but contextual factors can affect this (risk, relationships or resources).…”

“…[29][30][31] All three considered the psychological risks of disclosure, and "third party decision-making" was mentioned which has relevance for the decision-making process for people living with dementia. 16,31 Two of the disclosure decisionmaking models emphasized the role stigma can play in disclosure decision-making such that individuals with stigmatized labels (dementia) may choose secrecy as a way of avoiding public stigma. 29,30 In order to better understand the views of people with dementia, family carers and the wider public on barriers to disclosure and on carer involvement, these issues were carried forward to the stakeholders' consultations (phase 2).…”