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Planning for the future with people with dementia and their carers

Presentation for Dementia CongressNovember 1st. Find out more about NCPC's work on palliative care for people with dementia at www.ncpc.org.uk/dementia
by

National Council for Palliative Care

on 13 December 2012

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Transcript of Planning for the future with people with dementia and their carers

Big difference Small actions =
Not talking about it is a decision in itself,
a decision with consequences. Some tips:
Be direct
Acknowledge it’s not an easy subject for many people
Be clear what is possible and available
Be sensitive to cues
Listen to what people are saying
Allow people time to reflect
Be prepared to talk about it more than once Imagine you had a stroke yesterday and are now unable to communicate. Would people know....

How you would like to be cared for?
Marmite or jam?
Mozart or Coldplay?
Bath or shower?
Anything you definitely wouldn't want?
Who you'd like to be involved? Not involved?
Where you would like to die?
How you'd like to be remembered?
Whether you'd like to donate your organs?
What kind of memorial you'd like?
Who you'd want to look after your pet, to have your money (will), to have your box of memories in the loft... “The thing is, once you’ve
spoken about these things
(as hard as it might be),
you can put them away
and focus on enjoying things” A failure to talk about it deprives people of the window of opportunity to make plans for their future whilst they still have the capacity to do so. “Advance care planning ensures decisions about end of life are made at the point when the person with dementia still has an ability to shape decisions [and can] express their preferences, wishes and feelings about the type of care they receive and the place in which they receive it, and, ultimately, the place in which they die. This helps ensure that we do not have situations where people are admitted at the last minute into hospital, and experience less good end of life care as a result.”
- Paul Burstow MP, Minister of State for Care Services “I’m happy that Mum’s wishes will be carried out and that it’s all so comfortable, and that she’s comfortable with it too” But how do I
even start? “We were
prepared for
the situation
that hit us” -People with dementia, carers and former carers from Difficult Conversations for dementia (NCPC, 2011) What you might say:
How are you feeling?
Have you considered the future and how things might change?
Is there anything about the future you would like to discuss?
What do you feel about that?
Is there anything else you’d like or would like to know? Happy
Day of the Dead!! Death and dementia So what stands in the way? Two powerful societal taboos which stops people from talking about it and acting differently But together we can overcome this barrier “I didn’t know what Alzheimer’s would do to him; that his speech and understanding would go.
I was left with no idea of what he would want for a funeral or how he would like to be remembered” About us We are the umbrella
for palliative and end of life care Difficult Conversations for people with dementia
available at www.ncpc.org.uk We
Cover adults only and all of UK except Scotland
Promote care for all people with all conditions
Work with all settings – care homes, hospitals, GPs, social care, housing, hospices…
Give a voice to people using services at the end of life
Influence government & policy makers
Provide information and publications which change practice (combining evidence with experience)
And raise public awareness of dying, death and bereavement A big part of this work is ensuring no one is left behind We lead the Dying Matters coalition
to change this Set up as part of the End of Life Care strategy published by Department of Health in 2008, the first comprehensive strategy for dying people
Now has almost 30,000 members! Why is talking about it so important? 2006 2012 In pairs Brief background: What we're doing: Informing the public debate and dispel misconceptions
Producing materials to help people to actually have the conversation and plan for the end of life
Training professionals to feel more comfortable initiating conversations
Supporting community groups to do their own activities 68% of the public say they are comfortable talking about it death less than a third have actually discussed their wishes around dying. but Planning is even more important when capacity is likely to be compromised or lost Living with dementia This quote is from one of 50 conversations we had with people with dementia, their carers and former carers as part of our Difficult Conversations project At the same time, our work training GPs highlighted that professionals were not confident about raising the subject with people with dementia and their families We have resources to help you And when we do,
we make a huge impact on people's lives Time to Talk? available at www.ncpc.org.uk + The rest of our work on dementia The bottom line 2009 Aug 2006 Lloyds TSB Foundation award NCPC funding for a two year dedicated project exploring improving end of life care for people with dementia. Sept 2006 NCPC holds its first national conference on dementia which sells out, Palliative Care and Dementia: Moving Forward in Partnership Jan 2008 2008 2007 2010 2011 Some consequences last for a long time. And now one final thought.... ....to prove once and for all we're not all doom and gloom.... Thank you!

a.fuller@ncpc.org.uk

www.ncpc.org.uk
www.dyingmatters.org So what will you do after today? Task: Complete your 3 things slip to take away with you Remember: and on mental capacity National Dementia Strategy is launched – after much campaigning (and initially left out) objective 12 is Improve End of Life Care for People with Dementia Feb 2009 NCPC launches Progress with Dementia: Moving Forward. Professor Ian Philp, National Director for Older People says this work has ‘brought the issue to the fore in national discussions on end of life’ Aug 2007 The National End of Life Care Strategy is launched – people with dementia are highlighted as a priority group July 2008 Dec 2009 Care to Learn: Dementia Module is launched, an introductory training resource for people caring for people with dementia towards the end of their lives NCPC hold a conference in Swansea, South Wales. Speakers included Baroness Ilora Finlay of Llandaff and Dr Jean White of the Welsh Assembly Government. May 2010 A national conference is held in London. A keynote speech is given by Prof Alistair Burns, National Clinical Director for Dementia, who is challenged by delegates to ensure end of life care for people with dementia is a key priority going forward. December 2010 We organise with the Alzheimer’s Society the first joint meeting of the All Party Parliamentary Groups (APPG) on Hospice and Palliative Care and Dementia. Difficult Conversations for Dementia is launched July 2011 The sixth annual conference is held by NCPC, Dying Matters and partners. The former Secretary of State Rt. Hon. Hazel Blears MP shares for the first time her family’s moving experience of dementia. Dec 2011 The Prime Minister's Dementia Challenge is launched, and, after action coordinated by NCPC, improving end of life care included as a key action. A range of commitments are being delivered, including guidance on pain relief to be launched at the seventh annual conference in December 2012 April 2012 What kinds of things can people do? Listening to the experts Peter Ashley talks to Dying Matters `
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