dying to talk -facilitating discussions on future and end of life care with people who have dementia
TRANSCRIPT
DYING TO TALK – FACILITATING DISCUSSIONS ON FUTURE AND
END-OF-LIFE CARE WITH PEOPLE WHO HAVE DEMENTIA
Sarah Cronin, Marie Lynch, Deirdre Shanagher, Carmel Collins, Lasarina Maguire, Dr Suzanne Timmons, Jean Barber and Cecelia Hayden.
Celebrating Leadership and Innovations in Older People’s Services
Dublin Castle
12th April 2016
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Outline of Presentation• Dementia in Ireland• What do people with
dementia say about end- of life- care?
• Guidance Document development
• Facilitating discussions on future and end-of-life care with a person with dementia
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Setting the Scene: Dementia in Ireland
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People with dementia – what the research tells us…
• Dementia is not recognised as a progressive/ life-limiting illness• Progression varies significantly from person to person• People with dementia less likely to be referred to Specialist Palliative care • Less likely to be given pain relief• Palliative care needs poorly recognised and prioritised in healthcare settings• Can be more likely to undergo burdensome treatments• Training , knowledge and education of staff working in care settings with people with dementia requires an integrated and interdisciplinary approach
5What people with dementia say about end of life care:
RONAN SMITH Plan for
the probable, work for
the possible, hope for
the future
Hope that people
don’t have to feel
ashamed or awkward about a
dementia diagnosis….
life isn't over
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Still Kathy
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Background:
Palliative care for
people with dementia will be prioritised
in all care settings; and more people
will be supported to
die well at home
Practice tools, service models,
primary palliative care
Adaptation of Hospice Friendly
Hospital resources, development and
education for residential settings
Roll out and adaptation of Think
Ahead
STRATEGIC ENGAGEMENT
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Guidance Documents
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4 Guidance Areas1. Communication Skills
2. Capitalising on informal opportunities
3. Facilitating discussions
4. Hosting formal family meetings
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8 Tips for Effective Communication
1. Adopt a person centred approach to communication
2. Connect with the person3. Consider the communication environment4. Be aware of your own communication
style and approach5. Use active listening6. Use simple language7. Focus on one question at a time8. Clarify information and check for
understanding
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Acknowledgements
Thank you and QuestionsFor more information:
Sarah CroninDementia Development [email protected]
People with dementia and carers who have contributed and advised IHF
IHF Changing Minds Team Project and Expert Advisory and
Governance Groups Atlantic Philanthropies