A Participatory Action Research Study: Dementia & Human Rights

Dementia is considered by the World Health Organisation to be ‘a physical, psychological and economic burden’, in part due to stigmatisation maintained by barriers to participation for people given labels of dementia (PGLAD) in daily life. It is increasingly recognised visibility can be key to challenging stigma by enabling PGLAD to reclaim identities masked by power inequalities arising from negative stereotypes. This research answered a challenge from government and a call by the United Nations and the British Psychological Society for a redistribution of power in clinical, research and policy settings by sharing Participatory Action Research (PAR) with people affected by dementia labels as a tool to claim their human rights. Knowledge was generated with action taken through a collective letter disseminated to assumed power-holders in health, government and the third sector. Awareness was raised of issues related to stigma and the lived experience of PGLAD at the individual, social and structural levels. Responses from people in authority, either appointed or elected were considered, with non-responses also seen as a response. Co-researchers were commended for their insights and pledges to act were made. Pledges included change as an individual and as part of wider systems, including motivation to ensure PGLAD’s voices are heard developing policy across the region. Consequently, PAR enabled authentic participation of people with diverse abilities in research which delivered a community level intervention that achieved social and political change at a structural level, despite a pandemic as a barrier to participation. It showed the utility of anarchism as a conceptual approach that can complement a human rights-based approach to psychological research involving power dynamics. This highlights the continued importance of participation of PGLAD in research and the potential of human rights-based approaches as stigma intervention strategies.