This week has been a little bit unusual. As a dementia nurse specialist, and 'Champion' for dementia in the NHS Trust in which I work, I deliver education to other hospital staff. That's a key thing us Dementia Clinical Nurse Specialists can do you see - Educating others properly is what will lead to the improvements in care we all want to see for people living with dementia. So far not so unusual.
I teamed up with my colleague and Friend,Rachel Mortimer to deliver education to 1200 'patient facing staff' - That was the target set to us by the educational body overseeing the NHS in Kent Surrey and Sussex. We decided to run a number of screenings of the film 'Alive Inside'. Watch the trailer here To be honest, initially as an afterthought, we opened these screenings up to the general public.
It turns out quite a few family carers, interested community colleagues, and even a few people living with dementia were keen to be part of this. So this is where it becomes a little unusual - Hospital staff training that the public are keen to come to!! Just a word about Rachel's work: What she does so expertly is deliver approaches to helping people with dementia through 'Ignite' sessions, through her vision to create actual culture change, and stepping bravely into the machine that is the NHS - with only an aim of helping people.
We opened our first screening with a talk from Graham Browne, who lives with dementia. He very honestly shared with those in the room how he is very much still 'Alive Inside'.
A galvanisation in the room could be very tangibly felt. Pledges to share
the film at their own workplaces. People made pledges to bring music players / i pods to care homes.
I've always struggled a little bit with the term 'Dementia Friendly communities'. What does it really mean? Is it that the supermarket worker will have patience for the person who cannot manage the chip and pin machine due to worsening memory? Is it the bus driver knowing to prompt the lady who looks lost - They know her regular stop - she gets the same bus every day. Is it the parent who answers honestly to the child who asks why that old person over there looks 'really scary'? Is it the dropping of dementia from the unofficial 'Dirty word' list that we all store in our heads.
Surely it should be the case anyone with any kind of disability or long term condition has a right to access the community and be a part of it just as anyone else does? After all, we don't have 'Cancer friendly communities' or 'Heart failure friendly communities'. Yet people with dementia are often isolated, often alone, often ignored. People still joke about dementia. How many times do I tell someone what I do - They say 'Right, I know where to come when I loose my marbles then' before guffawing loudly at their own quip. I don't hear anyone make jokes about HIV or other serious illnesses.
A dementia friendly community is something that becomes such from within itself. It may take a push from members of that community with a passion and energy to bring dementia awareness to a town or a city. There is a project in Kent, the SILK team (Social Innovation Lab Kent) who have really worked WITH local people living with dementia. The result? Dementia Diaries - A really brilliant way of raising awareness and getting people talking about dementia. It is no coincidence that Kent has more admiral nurses than anywhere else in the Kent, Surrey, Sussex region.
A community that is friendly towards those people with dementia is also a community that includes support from a dementia nurse specialist. Well, it is in my view anyway. Though it seems to be the case that still this is not recognised or accepted. There is emerging evidence to strengthen the case - but it is slow to be accepted. This key report came and went with very little noise. RCN and University of Southampton Report on Dementia Specialist Nursing The Royal College of Nursing's 'Triangle of Care' - A great model seriously under-promoted and under evaluated. Why?
I attended a conference this week - A regional conference linking people working in the dementia field. Obviously there were only 2 people with dementia there - Why bother to involve those who actually live with the condition after all?? Still, an improvement on the none of last year. A new medical director is in place with regional leadership for dementia. He told us pushing up diagnosis rates is the 'new priority'.
I commented, when questions were invited that this is not new and actually those of us working directly with people with dementia need to see a focus on CARE after diagnosis. The gentleman told me it is new for him, and that no one has really taken notice of increasing diagnosis before. I considered asking him if he was aware of the 2009 dementia strategy but decided perhaps not. His comments were a stark reminder that the policy is still very much - Diagosis Diagnosis Diagnosis.
This was followed with comments from a 'Dementia Friendly communities Officer' (Yes, this is the job title - I have not made it up) who talked about a project to make several businesses in their area 'dementia aware' through Dementia Friends. I am not opposed to dementia friends, awareness is to be celebrated. Having a gas man(Or lady!) who is a dementia friend could be a real help. The point put to us at the conference was a project to make all the gas engineers dementia friends. There is no Dementia Specialist Nursing Support in the area this is taking place.
It is not however, a replacement for a skilled professional who can guide and support through the maze that is health and social care. The places dementia takes a person and a carer to can mean that very skilled psychological and emotional support is needed. This is why you need a dementia specialist nurse - not just the gas man. The Alive Inside Project has meant that I have been able to take what I know and understand about dementia, back out into the local community. It has helped hospital staff think differently about a person with dementia. If that helps to improve the care someone in hospital might get, so much the better. I've been able to learn about what really makes a community evolve into one that is dementia friendly.
Yesterday, I spent time with a family right at the moment of diagnosis. Then followed a conversation with the daughter of the person who lives 300 miles away, but love and worry travel endless distances. I listened, I explained, I made sense of the emotions flooding out. I answered the questions, I talked about what will happen next. I made a plan to meet again early next week. I used a variety of skills, counselling, assessing, judging need, actively listening, empathising and facilitating. I used my nursing and clinical knowledge of dementia to give the person and their family the personalised support they needed. I'm fairly sure I'd be rubbish at fixing a boiler, so I'll leave that to the gas man.
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