By Kath Sykes, Living Well with Dementia Implementation Lead, ARC KSS and Health Innovation KSS
We have lots of great evidence, going back over many years, to inform our health and care system (including our local authorities), workforce, and our population how to reduce the risk of dementia, and how to diagnose and support people to live well with dementia. Yet, frustratingly for researchers, health care professionals working in the dementia field and, most importantly, the people needing access to dementia care, this evidence is not standardly implemented, if at all.
As a result, we still hear common complaints such as: "nothing changes" and "it doesn’t make a difference", "stop researching the same things" or "we don’t have access to that service, my GP, or dementia support worker". Some of these issues are down to the pressure the health and care system is under and its priorities, some are down to cost, some are down to the relevance of the research in the ‘real world’, and some are down to how accessible research outputs are to both health and care professionals and people and families living with dementia.
However, whatever the reason, we need to find a way through this. We have a rapidly ageing population and significant workforce challenges, we have limited resources and need to prioritise sustainable health and care provision, and our research focus for most impact. We need to use what we already know to enable people to live well with conditions like dementia.
One common area of complaint is about the information people receive (or very often don’t receive), to help them live well following their diagnosis of dementia. 'My Choice' is a booklet designed to give research-based information in an accessible, trusted way, to empower people to make choices that can help them to live well.
'My Choice' was developed directly in response to concerns raised by people living with dementia, and the workforce working in this area. It has also been co-developed with them, and experts in each area have reviewed the content for accuracy.
Initial feedback from people living with dementia and workforce has been very positive. 'My Choice' is easy to understand and informative, people learnt something new and intended to use at least some of the recommendations. While there was personal preference about how much information is provided, as one family living with dementia said "it’s good because it doesn’t try to do too much".
During the first week after its launch ‘My Choice’ was downloaded over 1,350 times and was shared as a document via various networks too, demonstrating that there is both a demand and an interest in this type of accessible, trusted, evidence-based resource.
Our next steps will be to measure its impact in more detail, and develop it to ensure it is accessible to all communities.
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