Decision Making in Dementia Care: towards legal clarity and the acknowledgement of personal values

Emmett, Charlotte Ann Laidlaw (2023) Decision Making in Dementia Care: towards legal clarity and the acknowledgement of personal values. Doctoral thesis, Northumbria University.

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Abstract

This thesis brings together ten publications which span a decade of research into how the law governs decision making for people with dementia in England and Wales. It provides original and critical insight into how health and social care professionals interpret and implement the Mental Capacity Act 2005 (MCA), and related common law, when making decisions in three contexts: i) when assessing capacity and making residence decisions for people with dementia on discharge from general hospital; ii) when Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notices are used in acute hospital settings; and iii) when administering ‘forced care’ to people with dementia who display challenging behaviour.

Cited over 190 times in national and international texts and journals, this work makes a significant and original contribution to knowledge. Combining doctrinal and empirical research methods with authentic case vignettes, it presents an original, rich, socially-rooted understanding of how the law is actually understood and employed in different decisionmaking contexts, from the perspectives of multiple stakeholders: health and social care practitioners, patients with dementia, relatives and informal carers. This work also makes research-informed recommendations for legal reform and suggestions for how clinical practice might be improved.

Collectively, these publications form a coherent body of work, linked by three interrelated themes which emphasise: (1) inconsistencies in the way the law is understood and applied in hospital practice when capacity is assessed and best-interests decisions are made; (2) the significance of personal and professional values during those clinical encounters; and (3) the conceptual challenges practitioners face interpreting complex legal principles in the realities of health and social care practice, and how this can influence decisional outcomes and patients’ experiences of care.

Conducted during a period of sweeping incapacity law reform in the UK, this work has helped shape incapacity law and policy over the past decade, and continues to inform academic investigation into the legal approach to mental capacity assessment and best-interests decision making for people with impaired capacity, both nationally and internationally.

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