Paul Edwards is the recently appointed Director of Clinical Services at Dementia UK. Care Talk caught up with Paul and asked him about his thoughts on the current state of social care and support for people living with dementia and their families and his vision for the future.
Dementia care has come a long way since I started working in the field in the early 1990s. This decade brought about a new way of understanding dementia through person-centred care. There were so many doubters of this big ‘new’ idea to afford people with dementia and their families a greater level of humanity and relationship. Now, in the 21st century, where person-centred care is writ large across our health and social care system, it seems that argument has been won So that’s it; all fixed and better then?
We may have won the philosophical battle for a greater humanity for people with dementia and their families but I believe the hardest challenges are yet to come. We still have people with dementia and families working through a broken health and social care system, where rights can be ignored and where quality of care and quality of life can still be left to chance. At Dementia UK we know that people are getting lost in the system, voices aren’t heard and services are hard to access. I fully recognise some of the fantastic, life changing interventions that are emerging across our health and social care provision. Our Admiral Nurses for one work alongside families and people with dementia, giving the one-to-one support, expert guidance and practical solutions people need. The challenge for us now is to make person-centred care a lived reality across services, not just an aspiration on glossy leaflets. For this to happen, we need another, bolder, revolution.
What we have now is indeed different to the 1990s. We have ideas and examples of what works for people with dementia and their families. We have a growing body of research, though still nowhere near enough, about how to implement humanistic approaches. We have the voice of people with dementia and their families getting louder and, importantly, listened to. These things help of course and should influence and shape our services but there are still a few factors that limit our ability to fully deliver on these.
I hear so much about integration and clearly that’s one of the keys to providing better services but I don’t see much concrete evidence of that happening on the ground. Working in a national charity that straddles both sides of health and social care provision; people on both sides seem to know integration is the right thing to do but aren’t too sure about how it will happen. Discussions often centre around pooling budgets, becoming more efficient and improving access and quality; these are all great aspirations but until we have fully integrated models (with give and take on both sides) it’s easy to see why the status quo remains.
This issue is one of long term funding of course. We are still dragging our heels and the delay in a decision, hopefully cross-party, seems a way off. Without decisions being made soon, people with dementia and their families are still going to struggle and services will continue to be stretched.
I want to see dementia care, wherever delivered, support people with dementia and their families in a way that reduces distress and confusion. Family carers who call our Helpline are frustrated with delays, access and quality in services. This is one of the most pressing issues for our society and whilst good people will always do their very best to deliver services, we need a system revolution to really make a difference.
