Literature review: use of respite by carers of people with dementia

Abstract

Respite care is a cornerstone service for the home management of people with dementia. It is used by carers to mitigate the stress related to the demands of caring by allowing time for them to rest and do things for themselves, thus maintaining the caring relationship at home and perhaps forestalling long-term placement in a residential aged care facility. Despite numerous anecdotal reports in support of respite care, its uptake by carers of people with dementia remains relatively low. The aim of this paper was to examine the factors that constitute the use of respite by carers of people with dementia by reviewing quantitative and qualitative research predominantly from the years 1990 to 2012. Seventy-six international studies of different types of respite care were included for this review and their methods were critically appraised. The key topics identified were in relation to information access, the barriers to carers realising need for and seeking respite, satisfaction with respite services including the outcomes for carers and people with dementia, the characteristics of an effective respite service and the role of health workers in providing appropriate respite care. Finally, limitations with considering the literature as a whole were highlighted and recommendations made for future research.

Perceptions on technology for volunteer respite care for bedridden elders in Chile

“…The partnership between caregiver, care recipient, and respite provider should be the central component of respite service, although caregiver and care recipient may have different outlooks and benefit in different ways from respite care. The present study found that the caregivers would accept volunteer respite care as long as the dependent person felt or appeared comfortable and agreed to letting another person care for him or her, which has also been reported by other authors (Greenwood et al, 2012; Neville, Beattie, Fielding, & MacAndrew, 2015; Stirling et al, 2014) and highlights the importance of the relationship between all three stakeholders.…”

“…The present study further examines these obstacles to a successful partnership, also relating the desirable traits of the volunteer, where the caregivers consider that the person providing the care, whether paid or voluntary, provide emotional support and have knowledge on caring for elders; at the same time, it is of the highest importance that the person have prior experience in this work (Greenwood et al, 2012; Neville et al, 2015; Stirling et al, 2014). Another desirable characteristic of the volunteer, reported by the caregivers, is that they should belong to a volunteer service institution.…”

“…Moreover, various caregivers that participated in the Moule et al (2014) study had a positive experience when accessing the respite by means of a face-to-face interview, preferring personal contact over a telephone call. Along the same line, the informal caregivers of dependent people would enjoy the opportunity to speak and simply be heard by the respite care provider, whether paid or not (Greenwood et al, 2012; Neville et al, 2015). Regarding the regularity of the service, the caregivers recommend that the respite be carried out on a regular basis according to the schedule they require.…”

“…Additionally, Evans’ conceptual model of respite incorporates duration and flexibility as elements of the respite service; the former considers the time of the respite in hours, days or longer-term stay, while the latter considers the degree of adaptation to the service in terms of the caregiver’s selection of hours and length of time (Evans, 2013a). In effect, the lack of flexibility would be a barrier to accessing a respite (Jeon, Chenoweth, & McIntosh, 2007; Neville et al, 2015). …”

“…These characteristics are similar to those referred to by informal caregivers of dependent people, who consider that the treatment of the elder should be “lovely” and “kind” (Greenwood et al, 2012), and that the dependent person should receive quality care centred around the care-recipient’s daily routines and needs, as well as exclusive dedication that allows them to remain active and happy (Stirling et al, 2014). The caregivers of people with dementia also note the importance of delivering care that is centred around the care-recipient (Neville et al, 2015; Phillipson & Jones, 2011). In fact, in Greenwood’s (2012) study, the caregivers of elders considered discontinuing the respite service if the replacement did not attend to the needs of the elder, did not adapt to their routine and was not happy.…”