Going to the museum together: The impact of including carers in museum programmes for people with dementia

Abstract

Many people with dementia and carers receive support through the third sector, including through cultural arts interventions which aim to provide a meaningful, shared experience. Museums are one venue offering these interventions, including non-reminiscence-based programmes. Although there has been some research on the impact of museum programmes, it has tended to focus on positive outcomes. The impact of including carers in these programmes is also not well understood, which means it is not possible to say for which dyads they work, or do not work, or how to best support dyads in this setting. This thesis aimed to explore how including carers in museum programmes for people with dementia has an impact on the person with dementia, the carer, and the relationship between them, using a realist approach to develop theory. Theories were first developed through a realist review of the literature, and then tested in an evaluation at six museum sites, which included participant-observation of sessions and interviews. From these theories, a generalisable conceptual platform was developed on the core processes involved when carers are included. This research highlighted that the inclusion of carers has positive impacts, such as shared respite and opening up the museum, and negative impacts, such as highlighting losses and excess disability. The developed programme theories and conceptual platform considered how these outcomes may be generated. This resulted in a number of implications for further research, policy, and practice. The findings may also be applicable beyond museum programmes, and further research could use the theories and platform to consider how including carers may have an impact in other kinds of programmes for people with dementia, and in programmes for other kinds of dyads. This thesis suggests the inclusion of carers is not a neutral act, and careful consideration needs to go into how to support people with dementia and carers given the variety of positive and negative processes which can occur. Alongside making venues and programmes more dementia-friendly, there must also be a consideration of how they can become more carer-friendly.