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

• Published in: Aging & mental health 2020-03, Vol.24 (3), p.363-373
• Main Authors: Bhatt, Jem, Walton, Holly, Stoner, Charlotte R., Scior, Katrina, Charlesworth, Georgina
• Format: Article
• Language: English
• Subjects: Autonomy; Chronic illnesses; Cognitive ability; Cognitive impairment; Concept mapping; Decision making; Dementia; Dementia disorders; Literature reviews; Mapping; narrative synthesis; Neurodegenerative diseases; Parkinson's disease; Participation; Quantitative analysis; Quantitative research; Ratings; Ratings & rankings; Reviews; Risk factors; Systematic review
• ISSN: 1360-7863; 1364-6915
• DOI: 10.1080/13607863.2018.1544212

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