Stigma, discrimination and agency: Diagnostic disclosure as an everyday practice shaping social citizenship

Elsevier, Journal of Aging Studies, Volume 44, March 2018
O'Connor D., Mann J., Wiersma E.
The importance of stigma in shaping the experiences of people living with dementia and challenging their social citizenship emerges repeatedly as a powerful and negative force. In a recent participatory action research (PAR) study focused on understanding what people with dementia need to know to live well, this link between stigma, discrimination and social citizenship emerged once again. A group of people living with dementia (n = 8) met monthly for 16 months to discuss their experiences and advise on the curriculum of a proposed self-management program. From the first introduction, stigma was identified as a defining feature of the experience of living well with dementia. This paper analyses this group's talk around stigma and discrimination, drawing attention to the critical role that diagnostic disclosure has in both positioning people with dementia in a stigmatizing way and, also, acting as a strategy of resistance that facilitates full social citizenship.