Doing their damnedest to seek change: How group identity helps people with dementia confront public stigma and maintain purpose

Abstract

Dominant messages about the capabilities of those with dementia post-diagnosis are often dehumanising and focused on mental declines. Additionally, carers for those with dementia are more likely to be involved in consultations and enquiries about the condition. This study helps to challenge stigmatising cultural messages by reporting upon the experiences of 13 adults diagnosed with early-stage dementia and how their involvement with empowerment groups in Northern Ireland has led to their involvement in consultations with policy makers and educational opportunities with the wider public. The study finds that this not only helps in challenging stereotypical ideas about dementia, as well as informing others, but also gives a sense of purpose to adults in their post-diagnosis lives. It is further noted that group identity helps give confidence and amplifies the voice of those who take part, allowing members to adopt a shared narrative and learn from each other.