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Rethinking respite for people affected by dementia

Author(s)

OLDER PEOPLE'S COMMISSIONER FOR WALES

Publisher(s):

Older People's Commissioner for Wales

Publication year:

2018

This report provides evidence of how respite care for people affected by dementia can be positively transformed and aims to help policy makers, commissioners and providers to deliver change. It brings together the results of an engagement exercise with over 120 people affected by dementia, undertaken in partnership with My Home Life Cymru (Swansea University); a literature review by the University of Worcester Association for Dementia Studies; and a call for examples of practice. The report identifies key challenges facing people who need to accessing respite when they need it, covering the following themes: navigating the health and care system; availability; quality, flexibility and choice; information, advice and advocacy; meaningful occupation; home or away?; complex needs and keeping people active; safeguarding and positive risk taking; diversity; maintaining and building relationships; social inclusion and having an ‘ordinary’ life. Drawing on people’s experiences and examples from practice, it provides enablers to help overcome these barriers. The report shows that not all ‘routes to respite’ are clear to the public, there is uneven access across the country, many people feel that current options are not delivering the quality, flexibility or accessibility they need; and there were concerns that money is being spent on respite services that do not deliver meaningful outcomes. It concludes that there is a need to rethink the language and terminology around respite; make better use of the knowledge and experiences of people living with dementia and carers to develop new models of care and support; and to align the outcomes with the National Outcomes Framework. Whilst the report focuses specifically on people affected by dementia, many of the key messages will be relevant to other people who need respite. (Edited publisher abstract)


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