Centring the Human Subject: Catalyzing Change in Ethics and Dementia Research

Abstract

The Canadian Institutes for Health Research (CIHR) Strategy for Patient Oriented Research is grounded in the view that impactful health research is born out of research processes that include the voices of patients with lived experience. This current landscape reflects an international cultural shift wherein patients are increasingly participating in health research as advisors, partners, collaborators, and/or co-researchers engaged in all phases of the work, from developing research agendas to disseminating results. In the context of dementia research, patient engagement is especially critical as persons living with dementia have been systematically excluded from having a meaningful role in medical and social science research. Despite the potential benefits of engagement with those with lived experience, there are challenges unique to dementia research that cross-cut ethical and methodological domains. These challenges include soliciting informed and ongoing consent from individuals themselves rather than defaulting to proxy consent along the dementia trajectory; balancing opportunities for engagement with paternalistic requirements from research ethics boards; including informal caregivers’ perspectives whilst promoting individual agency of the person with dementia; and developing person-centred methods that accentuate the individual’s capabilities when communication may be impeded. In this chapter three guiding principles grounded in relational ethics and social citizenship will be presented that promote the centring of individuals living with dementia as patient-partners in research: 1) tackling unconscious bias; 2) moving beyond tokenistic participation; and 3) embracing a strengths-based paradigm. These principles will be illustrated with empirical data from the qualitative arts-based CIHR project ‘Living well with dementia to the end of life’ to illustrate these principles and provide concrete and practical examples of meaningful and respectful inclusion of people living with dementia in research.