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Blog post #5: Why I agreed to involve the service with this research

Blog post #5: Why I agreed to involve the service with this research

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In this blog post, the Head of Service for Dementia Oxfordshire, Peter Johnson, talks through the reasons why he felt this research presented an important challenge for him and his service to get involved with.

Who we are

Dementia Oxfordshire is the dementia support service for Oxfordshire, jointly funded by the NHS and County Council. I’m Peter Johnson and I head up this service which is delivered by Age UK Oxfordshire.

Dementia Oxfordshire came into being in 2015 when three smaller support services were brought together as a single contract. The vision was to provide on-going support through a single point of contact for people living with dementia in the community; from the point of diagnosis to either end of life or move to residential care.

That on-going support is provided through a framework of six-month reviews; we proactively contact clients every six months to check in with them. This allows us to provide relevant advice at the appropriate time.

We are currently supporting over 70% of the people living in the community with a dementia diagnosis.

Why we became involved in this research

I was approached about this research back in early 2020 and was attracted by the idea of using visual approaches to navigating a dementia support system where so much advice was both generic and in a written format. I was also drawn because the researchers had a good grasp of the fact that for anything to work, they needed to involve service users and have mechanisms to make sure their voice was heard.

It seemed to me that Dementia Oxfordshire could play a useful role by readily connecting researchers up to service users in a variety of different ways and that our Dementia Advisers (DAs) could advocate for their clients by identifying the common issues and challenges they are advising on.

I also had a personal interest in that I have worked on personal development programmes, including those for youth at risk, and I had learnt that to work with vulnerable people you need to build trust and demonstrate empathy. It’s important to have the humility to recognise that, but for my good fortune and my privileged background, it could so easily be me that is the vulnerable person needing support. I wanted to empower the people with lived experience of dementia to be involved in developing better ways of supporting them on their dementia journey.

The size of the challenge

Of, course the more you look into the problem, the more challenging the problem becomes. Dementia Oxfordshire is just one small part of the dementia support system in Oxfordshire, a system that, like most places, struggles to communicate well and has only a patchy understanding of how one part of the system impacts on another, which inevitably leads to a less than seamless service for People with Dementia (PWD), families and carers.

Add to that the limited funding available and it’s easy to lose heart, however as we grappled with the problem, visual approaches grew, in my mind at least, into a more general consideration of how we communicate, and how the way we communicate impacts on the people we are trying to support. The subtle change of a phrase, the gentle display of empathy, it can make an enormous difference.

Dementia and isolation

In my time as head of service, it’s become increasingly apparent to me that traveling the dementia journey is a very lonely and isolating experience. That all too often people feel alone with no one to turn to, not even someone to share experiences with.

I felt in my early days that there is very little the DAs can do, that the support we offer is really quite minimal, however, the more time I spent looking at what the DAs actually do and listening to people talk about why it makes a difference, I began to understand that what the DAs do is provide emotional support, they empathise with people and take the time to listen. Showing this empathy, which takes time and is something that for many people does not come easily, is what people really need. People know there are limited resources, and that the health and social care system is stretched, they accept that, what debilitates them is the feeling of being unheard or abandoned.

Hope for the future

So here we are, four years on and still trying to articulate the next research steps, I keep having to remind myself that ‘if this wasn’t hard, we’d already have done it’.

As the research has evolved and the focus has sharpened onto the use of language and how we communicate I am still hopeful, even enthusiastic. Changing small things can make a big difference. An example of this is that our clients tell us they hate being told they are being ‘discharged’ from the memory clinic, it makes them feel abandoned, and if we can stop using the institutional language and instead emphasise that they are being referred to other services or support it can make so much difference to how they feel.

Over the last few years, Dementia Oxfordshire has expanded, and we offer more support than just a dedicated DA. The groups we are connected with, the events we run, and the education sessions we deliver build a virtuous circle of support that helps connect people and reduce isolation. What I would like to see in the future is the wider support system across Oxfordshire become more integrated too. The idea of embedding and evaluating a forum to discuss dementia support strategically at county level is something else we are wondering if we can include in the research activities.

Peter Johnson

Head of Service
Dementia Oxfordshire
February 2024

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