The perspectives of people with dementia on day and respite services: A qualitative interview study

Abstract

Respite services have traditionally been viewed as services for carers mainly. Perhaps as a result, the perspectives of people with dementia have been largely ignored. In this study, we consider these perspectives in relation to day and respite services, and contextualise them in light of Kitwood's prediction that person-centred care would be adopted only superficially by such services. Convenience sampling was employed and semi-structured interviews were conducted with six community-dwelling people with dementia. A thematic analysis was conducted and four themes were identified: 'acceptability of service characteristics', 'meaningful engagement', 'personhood' and 'narrative citizenship'. The findings suggest that day services were more acceptable than residential respite, though some people would prefer home-based models, if available. 'Meaningful' engagement must be individually defined; however purposeful and reciprocal activity was commonly invoked as meaningful. 'Personhood' and 'narrative citizenship' were quintessential markers of quality care; while some people experienced personhood being bestowed upon them, others reported distinct instances of malignant social psychology, discrimination and stigma. In conclusion, an implementation gap may still persist regarding person-centred care in some respite services, based on the perspectives of people with dementia. Delivering the vision for care outlined here would require greater flexibility in service provision, more resources and more one-on-one staff-client time. The fundamental shift in thinking required by some staff relies on us supporting them to develop a greater self- and shared cultural-awareness around dementia.