Dementia is now the leading cause of death in the United Kingdom, so why does dementia care and support lag woefully behind that for other conditions? Dr Karen Harrison Dening, of Admiral Nursing charity Dementia UK, shares her thoughts.
One in every three people born in the United Kingdom in 2015 will one day develop dementia, a range of progressive brain conditions that already affect an estimated 850,000 UK citizens. Dementia costs the UK economy upwards of £26bn (~€30bn) every year – more than cancer and heart disease combined – but despite this significant price tag, it receives a disproportionately low level of funding: in 2016/17, just 20% of medical research charity spending went towards dementia, and families continue to struggle to access the dementia care and support they need to live well with the condition.
In August, charities Dementia UK, Alzheimer’s Scotland and Alzheimer’s Research UK joined forces to call on the new Health Secretary, Matt Hancock, to make dementia a top priority in health and social care, boost research funding and awareness-raising initiatives, and improve the level of support available to families living with the condition.
Here, Dementia UK’s Dr Karen Harrison Dening tells Health Europa more about the challenges facing dementia care today and why an Admiral Nursing-based approach could help.
The UK Government has been widely praised for its efforts to put dementia at the forefront of the global agenda following the Prime Minister’s Challenge on Dementia in 2012 and the G8 summit on dementia research and care in 2013 – has this momentum now been lost?
The trouble with the Prime Minister’s Challenge is that it raised expectations, and because we haven’t seen that consistent change that we hoped for, it’s easy to feel that the momentum’s been lost. However, if we think back and remember what dementia care used to look like before it had such a high profile, it’s much easier to appreciate how far we’ve come and what a big change has occurred.
We need to ensure that our society is compassionate to the needs of people with dementia. We have to truly embed dementia care equally across health and social care in line with other conditions. Anything else is just lip service.
So, I’d say that the Prime Minister’s Challenge has done an awful lot and we have seen progress, but there’s still a long way to go.
According to a recent poll, UK adults believe dementia is one of the top three health conditions the NHS should focus on over the next decade. Does this represent a growing public awareness of dementia?
One of the big things the Prime Minister’s Challenge did is it raised awareness of dementia, not just among the general public but also among general practitioners. But I think GPs still feel somewhat lost as to how to respond.
Similarly, we’ve certainly raised awareness among the public, but we need to have a look at how the condition is perceived generally. Dementia is a more stigmatised condition than cancer, for instance. If you think carefully about what that stigma’s about, I think it’s the feeling of not knowing what to expect or how you’ll be supported. It’s imperative that we have a plan of action in place so that people can feel confident that they’ll be supported should they be given this diagnosis.
We still have a bit of ground to make up, then, in terms of translating that awareness into action.
What is lacking in current dementia care?
We’re still very far from the kind of co-ordinated, integrated services that would improve the care of people with dementia and their families. The commissioning of services is very siloed and fragmented. In many areas, there are quite distinct health and social care budgets, which has resulted in disagreement over what health and social care should provide towards dementia. Of course, in the middle of that are families who are still finding it very difficult to know what they need and how to get it when they need it.
That’s certainly something we’re finding at Dementia UK, particularly via our Admiral Nurse Dementia Helpline. We get a lot of calls from people wondering how to get a diagnosis and from families just not knowing what the next step is. There are also many families benefitting from face-to-face Admiral Nurse support in the community, who help to point them in the right direction to social services and advise healthcare professionals about dementia. They advocate the joined-up approach which we urgently need in this area.
Something that we often see from callers who are healthcare professionals is a good commitment to increasing the percentage of diagnoses, so people are achieving their diagnoses better and more readily, but that’s almost the end of the health remit, unless there are other distinct problems such as secondary conditions alongside dementia.
If you were diagnosed with cancer, for example, there’d be a clear pathway, clear support, you’d be presented with counselling, treatment options and prognostic indication meetings, etc., but for the majority of people with dementia, people are just given their diagnosis and told to come back when there’s a problem. This leaves many families in the dark.
Which particular areas of dementia care would you like to see prioritised in the NHS ten-year plan and upcoming social care green paper?
I’d like to see more connectedness across services: in healthcare, social care, the voluntary sector, or the private sector. I’d also like to see parity of care across the country, so that no matter where you live, you can be assured that you’ll receive the same level of (quality) care as people in the bordering town or county. In that sense, there should be a care pathway that’s mandated by central government.
It’s also important that we see much more integration across health and social care – the main providers. The dementia pathway moves in and out of health and social care settings at different stages of the condition, and it’s important to acknowledge that.
Somebody also has to own dementia. It is a brain condition and should be afforded that level of priority, but now that it’s no longer considered a mental illness and has been removed from the remit of specialist mental health services, nobody seems to want to take overall responsibility for it. It’s become almost homeless, which means that people’s needs are being missed.
Case management and care co-ordination could be one way to ensure that the needs of people with dementia are being met, irrespective of where their needs lie at that moment in time. We’ve certainly seen some very successful models of this in Europe and particularly the Netherlands. Not only does case management help people to remain in their own homes for as long as possible, it is economically very viable, it results in huge savings for health and social care, and it’s highly regarded and valued by
I’m not saying that every family has complex needs that warrant case management, but if it was available in every locality, then the services could be co-ordinated around that to then enable families to get the level of care that they require depending on their needs. If there’s evidence of it working, why shouldn’t we be doing it?
How far does patient empowerment apply to dementia care?
My worry is that it’s more lip service. There’s an assumption that people with dementia don’t have a voice given the nature of the condition, but actually we have a lot of qualitative evidence from the families themselves about what they need. What people with dementia want is someone who’ll be there when they need them, not to lead them by the hand but to walk alongside them, to help them navigate their care, and to prepare them for the difficult times – in essence, case management.
NICE – who recently issued a new dementia guideline – grades evidence according to quality, and on the basis of that quality they either do or don’t make recommendations to clinicians. Unfortunately, the qualitative evidence that we get from working with families is not seen as the gold standard. Patients, carers and families are the experts on dementia; they’re the ones experiencing the condition. But because you can’t randomise, control or trial qualitative evidence, their voices are being left out of the conversation in favour of quantitative, statistical evidence. If we are to truly embrace the views of people with dementia, we have to value their voices. Services should be patient- and carer-led.
Something else that distresses me is the research agenda. There’s an awful lot of work going on into biomarkers and genetics, but meanwhile we still have hundreds of thousands of people with dementia whose needs aren’t being met and who we have to provide care for on a day-to-day basis.
How can Admiral Nursing support the delivery of dementia care, and what role does Dementia UK play here?
Admiral Nursing was born out of the experiences of a London-based family who found that while there was plenty of support available for their father, who had vascular dementia, the support offered to carers and families was lacking. They set the model up based largely on the Macmillan nursing approach to care, and over time the service has evolved to become much more relationship-centred. Initially, we just worked with carers but today we work with the whole family, because people are not islands and they don’t experience things alone. Whatever happens to one family member has a ripple effect on all of them.
The gold standard Admiral Nursing service is community-based and sees the same nurse work with a family from the point of diagnosis on, right across the trajectory of the condition, through death and beyond.
Dementia UK is the charity that supports and trains Admiral Nurses. We work to ensure the quality of the care that Admiral Nurses provide by helping to set up services with host organisations and by making sure that those nurses are as well trained and qualified as they can be. In that sense, we invest heavily in their continuing education, clinical supervision and emotional support – because delivering relationship-centred care to people with dementia and their families on a day-to-day basis can be very emotionally demanding, so we think it’s really important to support Admiral Nurses in a person-centred way.
The ultimate aim of both Admiral Nursing and Dementia UK is to ensure that everybody with dementia has access to a co-ordinated pathway of care. Dementia is a life-limiting condition, so it’s vital that those families who are affected by it have access to the support and interventions they need. This should be throughout the various stages of dementia to make their lives as full and as comfortable as they possibly can be.
If you’re in the UK and would like support and advice about dementia, call the Admiral Nurse Dementia Helpline on 0800 888 6678 or email firstname.lastname@example.org to speak to a friendly, qualified Admiral Nurse.
This article will appear in issue 7 of Health Europa Quarterly, which will be published in November 2018.