The Commissioner's ‘Dementia: More Than Just Memory Loss’ report, which was published in 2016, looked at how services across Wales need to improve to ensure that people living with dementia and those who care for them can access the services, support, information and advice that they need. One of the major issues that emerged related to the lack of timely, meaningful and impactful respite, an issue that was significantly and unnecessarily undermining people’s physical, mental and emotional health.
This was such a significant issue that the Commissioner made a commitment to look again at it in greater depth and this report gives a voice to people affected by dementia, organisations that support them, public service providers and a wide range of professionals, setting out what needs to change. It is clear that much needs to change in terms of respite: a fundamental shift in the way we think about respite is needed, and that change in thinking needs to both underpin and drive forward new models of support that directly respond to the issues that people who use respite have and continue to raise.
The key messages contained within this report make clear both how our thinking and practice needs to change. We need to rethink the language and terminology we use around respite; we need to rethink how we engage with people living with dementia and carers and use their knowledge and experiences to develop new models of care and support. We need to align the outcomes that we are trying to achieve with the National Outcomes Framework, ensuring that people are empowered to have a voice and control over the nature of the respite support they receive.
If this change does not take place, then our ability to deliver the outcomes that people have a right to, outcomes that sit at the heart of the Social Services and Well-being (Wales) Act 2014, will be compromised. People affected by dementia will continue to face unacceptable and avoidable pressures upon their physical, mental and emotional health, at huge detriment to themselves, and an unnecessary cost burden will be placed on public services due to increased demand for more complex and lengthy care and support.
Whilst this report has focused specifically on people affected by dementia, many of the key messages are equally applicable to other people who need respite. It is also relevant not just to our current generation of older people and their families, but to future generations and potentially each of us, as few can predict when we might need respite in the years to come. It is in all of our interests to rethink respite.
Click here to download Rethinking Respite for People Affected by Dementia
Annex 1: Useful Information and Practice Examples
Annex 2: Bibliography