Exploring multi-ethnic younger and middle-aged adults’ understandings of dementia and approaches to help-seeking

This research involved the participation of a hitherto under researched groups, namely younger and middle aged adults from lay public multi-ethnic communities. The overall aim of this research was to explore understandings of dementia and approaches to help-seeking. A qualitative study using grounded theory was conducted to develop insights about factors and issues that shaped understandings of dementia, including its framing to ageing and help-seeking. This research utilised focus groups with lay public participants to access a diverse range of perspectives and experiences. These were supplemented with interviews conducted with community workers to provide contextualised accounts of issues related to dementia help-seeking and care in diverse ethnic communities. A life stage approach was used to denote generational age and used to recruit lay public participants to the following three generational groups, namely 18-30 years, 30-40 years, and 40-55 years, from white British, Indian and Caribbean communities. Five community workers and volunteers were also recruited to participate in face-to-face semi-structured interviews. The findings from the focus groups suggest that ethnicity did not play a mediating role in the possession of knowledge and understandings of dementia. Other factors were identified, including: exposure to the media; caring for relatives; dementia in their social networks; exposure to dementia in higher education studies, and participants’ own information seeking behaviours. Ethnicity and generational age was suggested to adversely mediate access to mainstream health and media information for older generations from ethnic minority groups outside of this research sample. Two forms of conceptualisations of dementia were evident. These included the concept of dementia as a mental illness and as a normal consequence of ageing, although their expressions were nuanced. These concepts of dementia were inextricably linked to old age but there were indications of generational changes in the way old age was conceptualised. There was a move away from chronological age definitions to an emphasis on the ageing process, including how well individuals took responsibility for managing their own ageing process and mitigating their risk of developing dementia. A typology of help-seeking approaches and care strategies was developed. This consisted of four types; traditional, flexible, constrained and individualised, which were developed to convey differentiated approaches to help-seeking by ethnicity and generational age. These types encompassed adaptions and reinforcement of filial piety in response to structural changes and factors. These encompassed perceptions and experiences of racism in the mental health system and the availability of care home support. This research emphasises the importance of future research encompassing intersectional approaches to research design to capture the heterogeneity of perspectives within and across all ethnic communities. The key message to healthcare providers and commissioners is that they need to address structural barriers to diagnosis and care, some of which may be common across ethnic communities, whilst others maybe specific. This research makes a number of unique contributions to knowledge, one of which is the need for more nuanced approaches to conceptualisations of dementia. It also explicates and interrogates how ageing is framed in relation to dementia, including individualised responsibility for ageing in a multi-ethnic research sample. Finally, this research also differentiates help-seeking strategies within and across ethnic groups by taking into account generational differences, dynamic interactions between culture and structural factors.