Grant: Project Grant

PURPOSE: The purpose of this four-year study is to learn how communities can reduce stigma and promote social inclusion of people living with dementia. We are creating a team of academic researchers, people with dementia, and community partners who will work together, using the approach of "participatory action research", to meet two goals: (1) create a useful definition of "social citizenship" based on the experiences and opinions of people with dementia; and (2) show how this definition can provide practical guidance for communities to reduce stigma and promote social inclusion of people with dementia. METHODS: An action group of people with dementia will be the centre of a team that includes academic researchers and community partners. To meet the first goal, the action group will direct the team on gathering in-depth information from different groups of people in the community who are living with dementia. Methods will include focus groups, workshops, interviews, and observation. The information will be analysed to create a framework defining the concept of social citizenship and identifying ways to respect citizenship. To meet the second goal, the research team will use this framework with direction from the action group to identify, apply, and assess strategies communities can use to support social citizenship for people living with dementia. Information about the process and impact of these strategies will be gathered and analysed. IMPACT: Study outcomes will include a set of practical guidelines to provide direction for communities to reduce stigma and promote social inclusion of the growing numbers of people with dementia. We expect this to shape policy and decision-making at organizational and municipal levels. Including people with dementia in a full participatory role as co-researchers is groundbreaking in Canada, so we also expect study results to be influential for health and social care planning, and for further research.