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

Abstract

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.

KEYWORDS:

• Dementia
• autonomy
• decision-making
• narrative synthesis
• systematic review

Acknowledgements

We thank Jacqui Smith, the subject librarian for her valuable support on the systematic literature search.

Disclosure statement

The authors report no conflict of interest.

Disclaimer

This paper presents independent research funded by the Alzheimer’s Society and ESRC. The views expressed are those of the authors and not necessarily those of the Alzheimer’s Society, or the ESRC.

*Included systematic review articles.

Additional information

Funding

This work was supported by Alzheimer’s Society [AS - PhD - 16 – 022], the Economic and Social Research Council [ESRC grant number ES/J500185/1] and the Promoting Independence in Dementia Project [ESRC grant number ES/L001802/2].