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Abstract
Most research on marginalised groups, including those living with illness or disability, continues to exclude those experiencing illness or disability from decision making in the research endeavour. This is particularly true for persons living with dementia, who are stigmatised, misunderstood and assumed to lack the capacity to actively participate in all aspects of the research process. In this paper, we provide a detailed account of one collaborative project, an innovative participatory action research (PAR) project that brought together persons living with dementia, family members, recreation professionals from a range of settings (i.e., the community, day programmes, long-term care homes), Alzheimer Society staff and researchers as we worked together to consider the notion of leisure and its meanings for persons living with dementia. We describe the PAR cycles of planning, acting/observing and reflecting on what we have completed thus far; share our reflections on the process, including our struggles and insights on the possibilities of the approach; and present what we have learned from our partners with dementia about how we can better support them in similar processes.
Acknowledgements
We would like to thank all the partners who have assisted with this participatory action research project, as without their support this work would not have been possible. In particular, we would like to thank the members of the John Noble Home LEAD programme and the individual persons with dementia, family members and professionals who partnered with us on this project, including: Elaine Smith, Dick Stewart, Susan Harkness, Corrie Bradley, Connie Grafe, Karen Megson-Dowling, Jill Mercier and Christy Parsons.
Notes
1. The Murray Alzheimer Research and Education Program (MAREP) at the University of Waterloo, Canada.