Background: Dementia diagnosis is a major life event. What happens next can mean the difference between feeling ‘sent away’ and ‘opening the door’ to a future with possibilities and purpose (Kelly and Innes, 2016). Yet studies of support for people newly diagnosed with dementia have repeatedly highlighted gaps in provision and noted that services often fail to meet people’s wholistic needs. The Good Life with Dementia course is an innovative co-produced, peer-tutored course facilitated by an English third sector organisation specialising in dementia empowerment and engagement. This session presents the findings of a realist evaluation of the Good Life with Dementia course as an element of post-diagnostic support. The aim was to test and refine the underlying programme theory to better understand how change may be brought about by this complex intervention, as a first step towards full evaluation. Objectives: To explore the contextual factors and mechanisms at play that may influence outcomes for people with dementia participating in the Good Life with Dementia course. Methods: 1. Observation of two Good Life courses and qualitative interviews (guided by the initial programme theory) with Good Life participants living with dementia, supplemented by group discussions. 2. Focus groups about the transferability of the Good Life model with people with experience of dementia from South Asian communities. Results: Through observations, group discussions and interviews with 22 people with dementia participating on two Good Life courses, we learnt that peer-led courses can create a ‘safe space’ where people with dementia feel able to share experience, gain relevant knowledge and skills, and take on meaningful roles. People with dementia enjoyed the courses, felt ‘seen’ by others, grew in confidence and made social connections. We theorised that this could contribute to both positive reframing and tangible support networks which together could help people to live well with dementia going forwards. However, these outcomes are not guaranteed: they were produced in a context where people with dementia felt safe and seen as people with something valuable to offer. Professional facilitators have a key role in creating this context, as well as organising and sustaining the course. Our focus groups with 67 people from South Asian communities demonstrated the complexity of establishing these ‘safe spaces’ for people with diverse identities who may have differing social expectations and experiences. Cultural and community norms affect how people experience dementia, in both positive and negative ways, and creating a context where people feel ‘safe’ and ‘seen’ needs to account for this. Moreover, focus group members felt that social connection and shared experience goes beyond sharing a specific diagnosis or a specific cultural heritage, and contexts should therefore be culturally adaptive, to embrace a more inclusive, holistic view of people. Conclusions: This study produced a robust programme theory for peer-led dementia courses which will underpin future evaluative research and can also be used by service commissioners and providers looking to replicate the Good Life model in different settings with diverse communities.
CORE (COnnecting REpositories)
CORE (COnnecting REpositories)