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.

Right at home: living with dementia and multi-morbidities

“…While there was some understanding of the needs of people with dementia, this lacked any depth, particularly in relation to multimorbidities. This corresponds with persistent, ongoing calls for workforce training, education and upskilling (Dawson et al 2015;Department of Health 2016;McCabe et al 2016;Bennet, Honeyman and Bottery 2018;Abrams et al 2019;Cunningham et al 2019b;O'Shea et al 2019). Our study adds to this evidence.…”

Non-use of community health-care services – an exploratory cross-sectional study among family care-givers for older, home-dwelling persons with dementia

“…In this study, several of the family care-givers reported that the persons with dementia did not want to interact with strangers or felt unsafe in unfamiliar environments. An Irish study showed that some persons with dementia preferred in-home respite care (O’ Shea et al ., 2019). It is possible that the care recipients would accept the care arrangement and health-care professionals in their familiar home.…”

Perspectives of Australian family carers of people with dementia on the 'cottage' model of respite: Compared to traditional models of residential respite provided in aged care facilities

“…Further positives were that the cottages were not ‘institutions’, they conferred a sense of ‘familiarity’, intimacy and even agency by engaging CRs in daily activities. The latter is important because it recognises the importance of the autonomy and personhood of the person with dementia (Kaufmann & Engel, ; O'Shea, O'Shea, Timmons, & Irving, ). Within the cottages, CRs could choose to engage in social or functional activities with others (such as helping with meal preparation), enjoy spending time in the garden or simply relax in their rooms.…”