Shifting dementia discourses from deficit to active citizenship

Area of Science:

• Sociology
• Gerontology
• Cognitive Science

Background:

• Societal views of dementia often portray it negatively, as a 'living death', despite challenges from individuals with the diagnosis.
• Dementia remains a highly feared condition, influenced by cultural perceptions and societal roles.
• A sociological framework of citizenship can reframe dementia from a deficit model to one emphasizing agency and interdependence.

Purpose of the Study:

• To explore how people with dementia navigate identity and social participation after diagnosis.
• To examine the factors influencing the transition beyond the initial uncertainty following a dementia diagnosis.
• To challenge deficit-based narratives by highlighting the agency of individuals with dementia.

Main Methods:

• Qualitative studies focusing on social participation among people with dementia.
• Analysis of the transition into and out of a 'liminal' state of uncertainty post-diagnosis.
• Examination of factors such as diagnosis acceptance, social capital, and societal responses.

Main Results:

• The transition beyond initial uncertainty (liminality) depends on diagnosis acceptance, social capital, beliefs, social support, and comorbidities.
• Individuals with dementia may either embrace a new identity and social role or withdraw from society.
• Deficit-focused narratives do not fully capture the agency individuals with dementia possess to shape their social environments.

Conclusions:

• People with dementia can enact agency to establish new citizen roles post-diagnosis, moving beyond societal limitations.
• Reframing dementia through a citizenship lens promotes understanding of interdependence and agency.
• Challenging negative stereotypes is crucial for supporting social participation and well-being in people with dementia.