Why do we need Dementia Nurse Specialists? Why do we indeed? There is the Alzheimer's Society, and other groups in this sector doing vital work. The ground level work going on in the locality I work in from dedicated dementia support workers and information from dementia adviser is invaluable. The information available to Internet savvy carers is brilliant. dementiachallengers.com is one excellent example. Carer designed, carer led. We need that.
People living with dementia are finally starting to make their voices heard. Dementia Mentors is an emerging forum. Today was my first look at the site: Link here: dementiamentors.com
Graham Browne, represents people with dementia in our organisation. The most important thing about that, is his views are respected and truly listened to. There can be no room for mere tokenism in the involvement of people living with dementia in the development of support for people with dementia. Support. There is that all important word. Support is what it seems is still sadly lacking in too many instances. I'm happy to be told by people living with dementia what they want. As a nurse I am also an advocate to those I am so lucky to support and help,
I asked the question today 'Why do we need Dementia Specialist Nurses?' via Twitter. Hardly a scientific or controlled data collection exercise of course, but a sense of some initial answers in the here and now. Ken Clasper was kind enough to answer. He lives with dementia so this is an expert view.(https://twitter.com/ken_kenc) He said 'people who really understand what people are going through and are caring and understanding.' I completely agree. Of course this applies to all who help people with dementia - but lets not forget dementia specialist nurses. Lets make a very clear case as to why people with dementia need what they can offer.
Person centred care, needs led care, person focused care. All these terms essentially mean that care and support is provided in a way that responds to an individuals needs and feelings. Tom Kitwood knew this in 1997 - 'It is not enough to simply diagnose a person with dementia, and then leave them to their own devices'. This is absolutely true, and the book from which this came: 'Dementia Reconsidered' continues to be very relevant today. All these terms can be found in glossy care home brochures, in training manuals etc. We in the NHS talk of person centred care all the time. Why? Because it's the kind of care we would all surely want.
If you start to think more deeply about the meaning behind person centred care, You start to realise it is more than an approach, more than a ' model of care'. Now, we all know that there is a case not to over -medicalise dementia, not to confine it to to being the core business of health professionals. Indeed we should not, but that said, it is very important that people have access to a dementia specialist nurse should this be needed. This should be as PART of other support and resources offered.
Dementia, of any type is by nature a health condition that will progress over time. Living with dementia means coming to terms with a diagnosis, understanding the lifestyle changes you may need to make, and learning to cope with and manage a massive range of symptoms and changes to your mind and body. You are still you, but you now have a long term health condition. There are more than 3000 Macmillan Nurses for people living with cancer in the UK (Macmillan.org.uk). There are no where near this number of nurses dedicated to helping people with Dementia. Yes, it is a blunt argument, and of course the numbers of people with cancer are higher. The Admiral Nurse role, dedicated to helping people living with dementia through long term support for their carers is a model focused on relationship based, anticipatory care and support. There are 127 Admiral Nurses in the UK (www.dementiauk.org)
The Admiral Nurse Model is perhaps the most famous of ways of working. But I would suggest that most people have heard of Macmillan Nurses - I'm often asked 'What's that?', when I first mention Admiral Nursing. Dementia UK are developing the role, and the impact of Admiral Nurses cannot be overlooked - Th,ere are a number of carers who speak publicly about the benefits. There are also carers who speak publicly about their sadness at not having been able to access an Admiral Nurse. Sally Ann Marciano is a vocal advocate, after her father's experiences of dementia. (@nursemaiden)
In case you hadn't noticed, I am a dementia nurse specialist. I'm hospital based, but I'm able to work closely and directly with people with dementia. I am part of a small team. We offer a range of support and promote person centred care, You can read more about what we do here: We wrote a report about it!! http://www.kssahsn.net/images/pdfs/dementia/DementiaCollaberative6March14/The%20impact%20of%20the%20Dementia%20Champion%20Role%20at%20BSUH%20.pdf
There are other dementia nurse specialists emerging above the metaphorical parapet. Valerie Freestone is one of them. You can find her on Twitter as @dementia_nurse. Val was also quite quick to respond to my question. She said 'We have a quiet passion and vocation to make things better for all touched by dementia.' This struck a chord with me. Not because I am quiet! It struck a chord because it is that is possibly one reason why dementia nursing is so 'undersold' I do know there are dedicated, passionate dementia nurses out there. They are quietly advocating, gently disrupting less person focused ways of caring, and giving invaluable support. I'm pleased that Val was recently listed in the HSJ Inspirational women list. How fantastic to see a dementia nurse acknowledged in that list. There are many many community mental health nurses helping people with dementia. They have very large numbers of people to see and look after. Too many some might argue. A specialist dementia nurse could step in where the need is most intense.
Dementia Nursing IS a skilled specialism. During a recent interaction with a family carer, I reflected afterwards how, during that interaction, I had to call on many of those skills. I listened, I assessed, I helped unpick each and every difficulty. I responded with empathy where it was needed, words where they were invited, silence when it felt right. I provided answers to questions, and helped to give clarity to a situation that felt anything but clear. To do this, meant using a range of nursing skills, and knowing a thing or two about dementia. I don't live with dementia, so I cannot call myself an expert. However I do know and understand very well the needs, that the people I look after present with. I can laugh and cry with them, and I can use my knowledge and skills to help change a situation for a person with dementia.
A dementia specialist nurse can teach the essence of person centred care. You can share with others how to be led by the person with dementia, to feel your way to the words you need to say when they ask for a long deceased relative. You can work with a person with dementia to work out what that unmet need is. Education as a key part of the nurse specialist role is evident should you carry out a quick search of the literature.
'Dementia Nurses are expensive, and the model is unwieldy'. This has been said, to me, and no doubt to others. Dementia Nurses cost no more than diabetes nurse specialists, no more than Macmillan Nurses, no more than heart failure nurses. I have not heard anyone say recently that we do not need those specialisms. The instinctive wish for many nurses to be holistic and give care in this way is an opportunity to take the 'medicalisation' out of dementia health care.
Wider access to dementia specialist nursing may help to avert a crisis, help a person to come to terms with a diagnosis, it may help someone find the support they need to go on living. A dementia nurse can help guide the way along a road that can feel uncertain. They can offer in depth knowledge and skills that mean the right care is planned. Needs can be assessed fully.
It feels as though I have merely scratched the surface of possible answers to this question, but I would venture to suggest that the answer is 'YES' - We do need dementia specialist nurses. We need all those with Val's 'Quiet passion' to articulate it in the form of evidence of the good outcomes a dementia nurse specialist can help to achieve.
The recent All Party Parliamentary Group on dementia document 'Building on the national dementia strategy' did not make mention of the need for dementia specialist nursing care in its recommendations. I hope that this changes soon.
Thanks to @Aspirantdiva; +Ken Clasper; @alisonleary1; @JohnMinihan; @SheelaghMachin and to all who offered thoughts and insights.
