Uncertainties When Applying the Mental Capacity Act in Dementia Research: A Call for Researcher Experiences

ABSTRACT

The Mental Capacity Act (MCA) has been in force in England and Wales for over a decade. Although often considered in relation to health and social care, the MCA also governs the inclusion of people with cognitive impairment in research. This includes procedures for establishing whether prospective participants are able to consent to participation. Despite its importance in research, there is little literature detailing accounts of researcher’s experiences of working with the MCA’s decision-making capacity procedures when conducting research. To address this deficit, we present our experiences when conducting three separate studies involving people with dementia and therefore falling within the MCA’s research provisions. Study A (data collected between September 2016 and April 2017) discusses the subjectivity of capacity assessment; Study B (data collected between July and November 2017) details the negotiation of different opinions on capacity; and Study C (data collected between January and October 2013) considers tensions between legality and the principle of non-maleficence. Each of these experiences indicates a problematic degree of uncertainty within the MCA’s decision-making capacity provisions. We suggest two solutions. First, more detailed guidance is required, responding to uncertainties emerging in practice. Second, researchers should be encouraged to publish their experiences of working with the MCA. In outlining our own experiences, we hope to initiate such a body of work.

KEYWORDS:

• Dementia
• research
• capacity
• consent
• ethics

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes on contributors

James Rupert Fletcher’s PhD research was conducted at the Institute of Gerontology in the Department of Global Health & Social Medicine at King’s College London. His work looks at informal care from the perspectives of people diagnosed with dementia living in the community in the East Midlands, UK. He is interested in interpretative approaches to dementia, as well as dementia research more broadly. He is also interested in health and social care, ageing and mental health. His work is informed by symbolic interactionist and antipsychiatrist ideas, as well as social theory more generally. James lectures on the Mental Capacity Act’s research provisions at King’s College London and has been awarded the University of London Philosophy of Medicine prize for his work on the topic.

Kellyn Lee’s PhD research was conducted at the Doctoral Training Centre – Dementia Care, Centre for Innovation and Leadership in Health Sciences, University of Southampton. Her work explored the decision-making process relating to the objects a person with a dementia takes into a care home and the objects they are ‘allowed’ to use. She also looked at whether social citizenship is mediated, enabled and practised through the ownership and use of objects. Taking a critical approach she combined critical ethnography with critical realism, acknowledging our interpretations are socially constructed within a care home ‘reality’. She developed a theory of ‘Material Citizenship’ which places objects as central in demonstrating social citizenship. Kellyn has worked on various dementia-related research projects, taught psychology undergraduates at the University of Portsmouth and postgraduates on MSc Complex care in Older Persons, University of Southampton. She currently sits on the Faculty of Health Science ethics committee. She is interested in the MCA with a particular interest in how DoLS applications influence dementia care.

Dr Suzanne Snowden’s PhD research was conducted at the Institute of Gerontology, King’s College London. Her project explored the use of Assistive Technologies by people with dementia, to help them to perform Activities of Daily Living. The study included exploration of whether the use of Assistive Technologies in the community could prevent or delay a move to a care home setting. Suzanne became particularly interested in the research sub-sections of the Mental Capacity Act 2005 while preparing for ethical approval. She first brought a discussion of challenges with the MCA to the British Society of Gerontology annual conference in 2014, and has since guest lectured at multiple universities on the subject. Suzanne currently works for Alzheimer’s Society as Evaluation Officer within the Research and Development Directorate. This work necessitates a comprehensive understanding of consent procedures when collecting evaluation data from service users with dementia. Suzanne previously worked for Alzheimer’s Society as a Dementia Support Worker, which enabled direct observation of social workers conducting capacity assessments for decisions relating to their care and welfare. Suzanne participated in the Mental Capacity Forum’s 2017 activities to produce an easy-to-understand guide for researchers on the MCA.

ORCID

James Rupert Fletcher http://orcid.org/0000-0001-9198-4321

Notes

1 All participant names are pseudonyms.

2 A foundational principle of the MCA is that an assessor must assume capacity unless there is evidence to the contrary. Therefore, in cases in which there is uncertainty, one could argue that assessors should conclude that the person being assessed does have capacity. Such an argument is open to interpretation, further evidencing the influence of subjectivity within the application of the MCA’s provisions.

3 Staff at the care homes in question were too busy to be present during assessments, meaning that the researcher was left to conduct them alone.

4 See Booth (2012) and Gooding and O'Mahony (2016) for discussion of the legitimacy of mental capacity in legislation.

Additional information

Funding

This work was supported by the Economic and Social Research Council [grant numbers 1440363, 1014306]; and Alzheimer’s Society [grant number 17/IEC08/0003].