The Tea and Biscuit Challenge!

 

(Chocolate biscuits and Garibaldi's!)

For the most part, a cup of tea and a biscuit is a simple comfort, a few moments respite from a busy day.  Part of my work as a dementia specialist nurse is to see a person who has been referred for an assessment for a possible dementia diagnosis.  You might call this routine.  Dementia is never routine in the way it comes blasting into someone's life, a most unwelcome guest. 

I sat down yesterday with such a person, for an initial assessment.  It was a busy day, I had been asked to see a number of people across different areas of the hospital.  This person found it a little hard to understand why I was there.  It seemed like they could not understand why I might be there, wanting to talk, ask questions.  Why am I interested?  I suppose I could have recorded a view that this person was 'Reluctant to engage' - That gets written a lot about someone with dementia.  'Withdrawn'? Maybe not, maybe it's just they need more of a reason to let you into their private world. 

A health care assistant came over to us.  'Sorry to interrupt, but I wondered, would a cup of tea help?'  A smile, 'Yes please'.  To me 'Would you like one too?'......'No, I've not long.....Actually yes, I would love one - Thank you'.  I was going to say no, thinking that I should not appear as if I had time to sit and have tea - This is a busy day after all.  Then I realised how showing the person I had the time to be with them for a few minutes more.  I wanted to do that. 

The tea arrived, with biscuits, custard creams in this case.  The person I was with, for that 'assessment' smiled, raised their cup to me in a gesture of 'Cheers'.  The person who was not seeming to want to say much spoke a little more, of their loved ones, of home, of 'feeling lost'

This is no revolutionary idea of how to engage a person in conversation about something as important as dementia, or indeed a new theory of 'engagement' with a person with dementia.  This is the realisation that this simple few moments of enjoying a cuppa with someone made the connection.  It made a reason for sitting together.  The conversation, the dialogue even, it felt more worthwhile and valid.  In a few minutes of sharing tea and biscuits, the person generously shared their memories, and also a sense of how things actually feel in their own here and now.  That's so important if we want to understand how a person we are caring for might be feeling. 

Nurses are busy people,and sadly there are still too many horror stories, of relatives going to buy teabags for loved ones, of cups of tea left to turn cold at the end of the bed table of a frail and helpless person.  I have heard ward staff telling people to 'Wait until the trolley comes, its not time for tea yet'.  

So here it is, a simple ask:  Calling all nurses.....Make a pledge to spend five minutes to have a cup of tea with someone you are caring for (You could go all out and have a biscuit!). Ask them how they are, share an interaction in those few precious minutes.  Yes, we are all busy, very busy, but this is just an ask for five minutes of time with a person who might just really appreciate it.  

It wasn't until I arrived home last night, reflecting on the events of the day, I realised this 'little moment of humanity' was in fact, largely down to that cup of tea and a custard cream.  A nurse responded to a tweet I had posted this morning, and was brave enough to suggest it might also be good for nurses too!!  So go on, make your next working day (or night) the shift that you take that five minutes.  It would be great to hear how it goes!!  Share your tea and biscuit moment, you never know what it might bring you and the people you are caring for.

Just to illustrate the point.......

(Mr Marsters enjoying the tea and biscuit challenge)

So why do we need Dementia Nurse Specialists?

Again the months have run away with me since I last posted.  I enjoyed writing the guest blog for the Chaplain's Blog series recently.  It even came back to me that one or two people enjoyed reading it!  So the compulsion to write comes once again.  

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. 

Saying goodbye to Gran

Today is the day gran makes her final journey, and we join her to say goodbye.  As a little girl, growing up, I spent long holidays with gran at home, and many afternoons after school.  My mum was a busy working mum like me, and she must have been comforted to know we were in good hands.  Gran and grandpa made every afternoon and holiday fun.  

Fish and chip suppers, nature walks, cream teas in Steyning, magic tricks in the kitchen and Fats Waller on the cassette player.  Gran would get on the piano and play boogie woogie style - I thought she was amazing.   I now realise that Gran fought a life long battle with anxiety, depression and the subsequent isolation of living with this.  Never once did she show this to us - She laughed with us, she cried with us, she hugged us, and nurtured us. 

Her hair always beautifully set, lipstick red and vibrant. Gran was a profound influence on me as a little girl, and as I grew up, I never forgot her.  Even in my teenage years, when perhaps I did not appreciate family as you do when you are older - I would go to her and sit with her for afternoons in front of the television.

 I always came back to see her on holidays when I was at university, the years I lived away I always called in on trips back to Sussex.  She stoically cared for grandpa - dementia saw to it that he would be taken from gran long before she was ready.  I loved that she put my graduation photo proudly on her mantel piece.  When I unexpectedly became a mum myself, at 23, it was a tough time.  Gran delighted in showing me how to nurse my bundle of joy, and her wisdoms gave me so much strength when I needed it the most - and to think she was 87 then!!

Gran strove to guard her independence with a fierce determination - Sometimes, it was hard to help her.  I learned to just be alongside her and wait to be allowed in to her world as her own experience of dementia unfolded.  The day last August when we took her things to the care home - my heart broke for her, but I was privileged to have been there for her.

When I look back at the memories Gran has given me, even in the sadness of today, I realise those memories will last forever, and how lucky I am that she has given me these precious moments.  She is now, I am sure, together with Grandpa again, the love of her life.  Peace for her at last. 

Thank you Gran, for all you have given me.  I will speak for you today, and I hope I make you proud one last time. 

One man and his book

It was my new years resolution to write more!  January went by in a flash, and this month is racing by too.  At work we are in the grip of 'winter pressures'  What that means in reality is the cold, the rain, the terrible floods, the grip of winter - means our hospitals are needed more than ever.  So this means there has been a lot of people with dementia, and their carers coming into contact with our little team.  Often I encounter an attitude, a problem, a dire situation for someone with dementia.  I make a mental note that I must write about it, but all to quickly the next situation arises - and my attentions are refocused.  One day I will see someone who has lived with dementia with practically no support, maybe a carer is struggling to accept a diagnosis, maybe it will be helping someone who is nearing the end of their life.  Often there will be a person with dementia for whom hospital is a difficult place to be: Maybe they have let us know how hard they are finding it by lashing out, crying out, turning away from the nurses trying to help them.  That's a significant part of being a dementia nurse in a hospital - helping those people find a way to tell us what is needed.  Not easy.  So you can see: so many questions, so many attitudes that need to change, so many questions........

I attended the launch on Saturday of 'Living Well with Dementia', by Dr Shibley Rahman.  This book, years in the writing, and thus far very well received, might just help with starting to lay down answers to the questions we are continually asking.  Why isn't the wellbeing of people with dementia made plain in health and social care agenda's?  Yes - we are told by strategists and health leaders that everyone with dementia will be helped to 'live well',  - and I welcome that, but maybe those strategies don't go far enough.

At its heart, this book has the voices and experiences of people with dementia and their carers.  Their voices are interwoven into the book in a way that is inclusive, not mere tokenism.  Shibley spoke candidly at the launch, of the taboo's around care at the end of life, sexuality, the aggressive stance of the dementia challenge in its language.  There was recognition of what people with dementia and their carers live with day in day out - the tears, the laughter, the business of simply 'living'.  It is this lived experience that gives the book a 'soul'

We cannot afford to reject the concept of well being.  It just makes too much sense to be ignored.  In my job, I see every day what happens when a sense of well being is absent.  As with any long term condition, dementia is not something we should just 'manage', or 'treat'.  We must help people to live their lives, find acceptance when dementia forces it's way through the door.  We must not stigmatize - yet I am afraid we still do.  There are lots of text books about dementia.  When I was a student nurse I read Tom Kitwood's Dementia Reconsidered - I remember feeling a sense of excitement reading that book.  I can honestly say I feel just as excited by this book.  It goes beyond the obvious questions that are always asked.  This book is going to be an influential text that will surely go a long way in contributing to re balancing the health and social inequalities experienced by people with dementia.

The first case of 'Alzheimer's' was diagnosed well over one hundred years ago.  I recently read somewhere there is a feeling in research and societal attitudes that we haven't moved on very much since then.  This book gives me hope that we are finally doing just that.