Diagnostic Disclosure

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.