Abstract
BackgroundRespite services provide a break in the caregiving relationship for people with dementia and their carers, however they are often under-used and service acceptability can be low. This study aims to understand key stakeholders’ experiences of respite services for people with dementia, with a view to informing respite service development.MethodsA systematic search was conducted of the Pubmed/MedLine, Embase, Cinahl, PsychInfo, Scopus, Web of Science, and Cochrane databases (1980–2016, English) with fixed search terms relating to ‘respite’ and ‘dementia’, following PRISMA guidelines. Noblit and Hare’s approach to meta-ethnography was employed. Key concepts were identified across the papers and reciprocal and refutational translation techniques were applied to primary studies; findings were synthesized into third order interpretations and finally, a ‘line-of-argument’ was developed.ResultsIn total 23 papers were reviewed, which described 20 independent samples across 12 countries. The views of 889 participants were synthesized (13 people with dementia, 690 carers, 44 ‘service providers’, 52 frontline staff, 70 managers, 12 volunteers, six academic/policy-makers, and two independent consultants). Five key concepts were identified and outlined i.e. 1) the transition to service use 2) expanding organizational capacity 3) dementia care quality 4) building a collaborative care partnership and 5) dyad restoration. There was broad agreement around the key areas for service development across the range of stakeholders (flexible and responsive person-centred care, meaningful activity for people with dementia, enhanced client-service communication and informational support). However, there was clear divergence in stakeholder perspectives around the barriers to implementation of such developments. Organizational tension was evident between frontline staff and management in respite services, hindering the cultural change necessary to facilitate service development in line with dyad’s needs and preferences.ConclusionRespite services must surmount internal organizational barriers to change, and cultivate a collaborative solution-focused care culture, which acknowledges the centrality of the dyad and their care preferences. Future research should explore the development of alternative/modified community respite service models, which have greater capacity to be responsive to the needs of each individual dyad. The perspectives of people with dementia must be included in research in this area going forward.Trial registrationPROSPERO Registration Number: CRD42016050191.
Highlights
Respite services provide a break in the caregiving relationship for people with dementia and their carers, they are often under-used and service acceptability can be low
These findings indicate that respite services may not always provide care that is acceptable to its clients
The views of 423 participants were synthesized from the 17 independent qualitative studies, including 13 people with dementia, 224 carers, 44 ‘care providers’, 34 ‘frontline staff’, 53 ‘managers’, 12 ‘volunteers’, six ‘academic/policy-makers’, and two ‘independent consultants’
Summary
Respite services provide a break in the caregiving relationship for people with dementia and their carers, they are often under-used and service acceptability can be low. The need for appropriate and acceptable health and social care services for people with dementia is increasing as the population ages and more people are diagnosed with dementia The experience of this condition can be challenging for people with dementia and their carers, and can make the dementia caregiving relationship difficult to maintain in the longer term. There is evidence that along with access and availability issues, and psychosocial barriers to attendance, there can be a significant lack of client trust in existing respite services and the quality of dementia care provided [9, 10] These findings indicate that respite services may not always provide care that is acceptable to its clients (i.e. people with dementia and their carers)
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