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Improving Dementia Care: Addressing Inequality in Post-Diagnostic Support

Professor Louise Robinson was a key figure in Newcastle University’s recent successful bid to become one of the Alzheimer’s Society’s new Centres of Excellence. The Centre’s £2m grant will fund research into the ‘postcode lottery’ of post-diagnostic support for people with dementia - and examine whether receiving support through primary care routes, such as GPs or community services, could improve the support people receive.

How did you become involved in this research space, and what’s the most compelling issue for you?

My interest first started in dementia care when I was training to be a GP in rural Northumberland. I’d seen a lady whom I thought probably had dementia and I wasn’t quite sure what to do. I spoke to my trainer, and he said, “Well, you’re damned if you do and damned if you don’t make a dementia diagnosis.”

I asked, “Well, why wouldn’t I?” He replied that if we wanted to make a diagnosis, we would have to send her 40 miles to Newcastle to the memory clinic which would be quite traumatic for her. And then, if she got diagnosed there was no treatment, so what would we do then? There was no point, he said.

It never quite left me really that I witnessed families with dementia who seemed to be getting a suboptimal service. I felt angry and sorry for these families. If there had been a cancer diagnosis the support would have been entirely different.

For two similar illnesses where there were potentially devastating consequences, one was getting so much attention, and rightly so, but the other was just ignored, and nobody seemed to be that bothered about it.

So, after my GP training, I realised I wanted to do something more, and I moved into research.

"We should no longer hear stories of discrepancies in care because there are some great examples of care around the country. The question is, ‘why aren’t they standard?’."

What do you think the most significant shift around dementia has been in the past twenty years?

I still work as a part-time GP, and I see a substantial attitudinal change in the public undoubtedly.

Fifteen years ago, I would never have had people coming into the surgery saying, “Doctor, I’m forgetting names. I couldn’t find my car keys. My mother had Alzheimer’s and I’m really worried I might have it.” That is quite routine now - the public attitude towards dementia is so much more open than it was.

That’s been greatly helped by various media stories and celebrities who’ve acted as Alzheimer’s Society ambassadors as well as dementia being featured in television programmes and soap storylines.

What upsets me though is that there is still such inequality in post-diagnostic service provision compared to many other illnesses. I think it really is a postcode lottery as to what treatment and support you get with a diagnosis of dementia.

In Newcastle, for example, we’ve only just got our first Admiral Nurse. He arrived just under a year ago, and he’s already overwhelmed. Admiral Nurses have been around for a long time, but it’s taken us almost a decade to get them to the northeast.

I look at the number of Macmillan nurses around, and I can’t understand why we can’t have a model like that for people living with dementia.

How do post-diagnostic services for dementia compare to those of other long-term chronic conditions?

Around ten years ago, there was a significant shift in the way primary and community care in the UK was being delivered. This was toward GP teams having greater involvement in the management of chronic illnesses such as diabetes, mental illness, high blood pressure and even cancer and palliative care.

"I think we should have had more joined-up working between primary care and specialist secondary care [in dementia] a long time ago."

All of these now have a very strong, shared care model with clear responsibilities for the GP and the primary care services, who are providing the majority of care to patients most of the time.

When things go wrong, or if you’ve got more complicated cases or perhaps younger patients, then the specialists get involved and in some instances take over.

That to me, is a primary care model - some people call it a task-shifted model - where you have generalists doing core care such as giving the person information, talking through their diagnosis with them, making sure they’ve got access to support and specialist services, looking after their general health, both physical and mental, and supporting their family.

There’s been a lot of effort taken to train up GPs and community nurses and get them more skilled to take on this increased role - and it has been very successful.

This is not the case with dementia, and that’s where I think we’ve missed the boat slightly. We should have had more joined-up working between primary care and specialist secondary care around dementia a long time ago.

We should also have been developing tighter shared care pathways and working more with the voluntary sector as well. Alzheimer’s Society, Carers UK and other associations all have huge amounts to offer in terms of practical, family and psychological support, and are crucial in the care pathway.

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Is it too late to develop this as a model for post-diagnosis care in dementia?

Well, one of the difficult things I find with the NHS is getting information on what’s happening where in the country. Certainly, on the NHS website, there are examples of good practice or innovation in dementia care – one model, for example, is Gnosall in Staffordshire.

Ian Greaves who led that had a very joint shared care approach with the GP in the practice doing most of the care with a nurse acting as a care coordinator and the psychiatrist coming in to do clinics every month or two. The problem is that there isn’t a standard national approach to post-diagnosis dementia care.

How important are larger scale, centralised research programmes like the Alzheimer’s Centres of Excellence?

We’ve been very lucky in Newcastle in that we’ve recently been given a large sum of money from the Alzheimer’s Society to create a Centre of Excellence, looking into providing better quality, more community-led post-diagnostic dementia care.

It’s a £2m grant to fund a four-year programme that aims to map out what’s going on around the country and explore what good practice is, where it’s being delivered, why it’s working and if it isn’t then why?

I think in a small country such as the UK, which actually punches well above its weight in terms of higher education research, there’s no point in working against each other in a field such as dementia. My experience has been that you need these big interdisciplinary teams to make real progress.

I’m working closely with colleagues at University College London on this, as well as experts such as Alistair Burns from Manchester University, who is the National Dementia lead and also involved in the research.

Within the project, we are collaborating with the key disciplines, specialists and those in primary care and social care, with a view to looking at how we can work better together to benefit families.

We’re also starting to look at expanding our expertise on the project too - obviously, post-diagnostic care is not just about health and for people with dementia, environment is very important. So we are starting to include the dementia friendly housing experience in our research and bringing in a wider community perspective.

What are your aims for the Newcastle Centre of Excellence at the end of the programme?

There is still too much variation in care provision across the UK, and even within types of dementia. People with Alzheimer’s have often had a better service historically because they’ve had the drugs and nursing support to help them monitor these, whereas, people with vascular dementia, for example, are often just discharged to their GP.

This has possibly been because Alzheimer’s has been the dementia that people thought would get the ‘magic drug’ for first, but as yet we have no magic drug, and increasingly research tells us that the risk factors that lead to vascular dementia are also very important in Alzheimer’s disease.

What I want to achieve at the end of this is a national care pathway – a national recommendation if you like, that every person with dementia and their families should have access to the core components of good dementia care in a standard post-diagnostic package that will be available where they live.

The pathway will mean the people who are looking after them for most of the time, which will inevitably be their GP and primary care teams, will have a level of knowledge that is appropriate to help them feel confident in looking after those families, just as they look after people with diabetes or stroke disease.

We should no longer hear stories of discrepancies in care because there are some great examples of dementia care around the country. The question is, ‘why aren’t they standard?’

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