‘I am making a difference’: Understanding advocacy as a citizenship practice among persons living with dementia

Abstract

In recent years, persons living with dementia have started advocating to have a more active role in shaping policies and interventions that impact their quality of life. In order to meaningfully involve and engage persons living with dementia in decision-making processes, community partners, providers, planners, as well as researchers and healthcare practitioners need to have a better understanding of their experience of living with dementia. Focusing on the lived experiences of dementia and advocacy enables the understanding that persons living with dementia can be agents of change with purpose and intent and helps us think beyond common stereotypes associated with dementia. Despite the valuable efforts of advocates to create this paradigm shift, there is limited research documenting their experiences of advocacy. Using the citizenship perspective, this study explores the experience of advocacy through semi-structured interviews with three persons living with dementia in Vancouver, Canada, focusing specifically on their motivation to advocate and the challenges they have faced along the way. Findings suggest a number of ways through which advocates living with dementia position themselves as social citizens. Consistent with the dimensions of social citizenship, participants suggested that advocacy (i) gave them a sense of purpose; (ii) helped them express their solidarity with the wider community of people living with dementia; (iii) facilitated their fight for freedom against stigma and discrimination; and (iv) enabled them to grow and evolve over time. Supporting individuals' meaningful engagement and advocacy helps acknowledge the agency and autonomy of persons living with dementia and their identity as social citizens. Taking this approach is imperative to facilitate community partnerships with persons living with dementia and their engagement in the development of relevant policy and practices aimed at creating dementia-friendly communities.