Positioning ethnicity in dementia awareness research: does the use of senility risk ascribing racialised knowledge deficits to minority groups?

Over recent decades, the importance of increasing dementia awareness has been promoted by charities, researchers and governments. In response, a large body of research has emerged that evaluates the awareness of different populations. One such population are minority ethnic communities. Associated studies typically conclude that minority ethnic groups have a poor awareness of dementia and that interventions should be developed to better educate them. Operationalisations of awareness almost always reference senility - the traditional notion that dementia is a natural outcome of ageing - a widely held belief among many populations. Senility is considered incorrect knowledge in the research literature, and those participants who identify with it are deemed to have poor awareness. Despite the researchers' claims that senility is false, the scientific evidence is inconclusive, and the concept is contested. As such, a large body of research repeatedly positions minority ethnic communities as inferior and in need of re-education based on researchers' questionable assumptions. This issue is bound up with a racialised deficit-model of science communication and wider critiques of psychiatric colonialism. In response, researchers of dementia and ethnicity should reflect on their own awareness and the ways in which they position others in relation to it.

Destigmatising dementia: The dangers of felt stigma and benevolent othering.

The destigmatisation of dementia through awareness raising campaigns and associated activities has become a key pillar of dementia studies and related activism. This anti-stigma agenda is undermined by a poor evidence base and inadequate operationalisations of stigma. Scambler's distinction between felt stigma and enacted stigma provides a conceptual basis for improvement. Felt stigma encompasses negative self-appraisals and fears regarding the reactions of others, while enacted stigma describes active discriminatory behaviours. Awareness campaigns based around high-profile spokespeople and pathology-based models of dementia may effectively tackle enacted stigma, but they may also unintentionally exacerbate felt stigma. Distinguishing people with dementia as an exceptional group to elicit public sympathies promotes benevolent othering, unwittingly implying their negative otherness. This is problematic because felt stigma is typically more prevalent and deleterious to wellbeing than enacted stigma.