changing minds & development of guidance documents
DESCRIPTION
Overview of the Changing Minds programme and specifically of the guidance documents being developed as part of that programmeTRANSCRIPT
Marie Lynch & Carmel CollinsHead of Healthcare Programmes Dementia Development Officer
The National Dementia Strategy Conference
8th October 2014
Todays Session
1. Provide overview of Dementia Palliative Care
2. Introduce the IHF’s Changing Mind Programme
3. Resourcing Staff – 10 Guidance documents on End of Life care for people with dementia
4. Outline the key components to communication on matters relating to end of life with people with dementia
Palliative Care and Dementia Care
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. (WHO 2014)
Palliative Dementia care actively treats distressing symptoms (physical or psychological or emotional) to optimise the quality of life for the person with dementia and their family, knowing that the underlying cause cannot be cured. (Australia 2009)
Context and Policy
2001 2008
2012
2013
2008
2012
2013
Irish Hospice Foundation - Dementia Population
- Policy Context
41,000
140,000
Awaiting Publication of Irish
National Dementia Strategy 2014
End of life care needs of people with dementia
Care Transitions
Multidisciplinary team involvement
Pain & other
Symptoms
Communication Loss and bereavement
2013 - 2016
Three OutcomesPalliative care
for people with dementia will be prioritised in all
care settings; and more
people will be supported to die
well at home
Better end of life care in
residential care settings for
older people with a focus on
people with dementia
Increased public awareness on
death and dying, with more
people including those with dementia,
engaging in early advance
planning
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
4 Project Groups
Participation
Dissemination
REPRESENTATION: Nursing, Medicine, Palliative care,
Intellectual Disability, Patient Groups
Public meetings, consultations, grant funding, seminars, workshops, carers
Information leaflets, communiques, website,
contact database
STRATEGIC ENGAGEMENT
2013 2016
Palliative care for people with
dementia will be prioritised in all
care settings; and more
people will be supported to die
well at home
Planning for the future
Understanding late stage
Loss and Bereavement
Communication & advance care planning
Intellectual disabilities
Pain, Symptom , medication
Ethical decision making
Bereavement
RESOURCES FOR PEOPLE WITH DEMENTIA & THEIR FAMILIES, & STAFF
GUIDANCE DOCUMENTS
Palliative care for people with
dementia will be prioritised in all
care settings; and more people will be supported to die well at home
EOLC dementia pathway acute hospital
Good Neighbour scheme – advanced dementia
Communicating end of life and dementia residential care
Supporting palliative care needs when care transitions are necessary
5 REGIONAL SEMINARS
DEVELOPMENT GRANTS – GRANT CALL NOW OPEN FOR 2015
SUPPORTING HOME DEATHS FOR PEOPLE WITH DEMENTIA
Palliative care for people with
dementia will be prioritised in all
care settings; and more people will be supported to die well at home
3
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25
50
63
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10
20
30
40
50
60
70
2007 2008 2009 2010 2011 2012 2013
68
15 15
7
15
34
45
0
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10
15
20
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2010 2011 2012 2013
Male Female
Better end of life care in residential
care settings for older
people with a focus on
people with dementia
Need to support residential care centres meet end of life care needs of residents and
comply with regulations
Better end of life care in
residential care settings
for older people with a focus on
people with dementia
Onsite facilitation Individual tailoring for quality improvement
EOLC toolkitEducation
End of life reviewsTelephone support
End of life toolkitOnline learning and
supportCommunity links
EDUCATION AND TRAINING FOR HEALTHCARE STAFF
• End-of-Life Care Training Workshops
• Conferences and large-group presentations
• Supporting families 6 week module
Better end of life care in residential
care settings for older
people with a focus on
people with dementia
Increased public awareness on
death and dying, with more
people including those with dementia,
engaging in early advance
planning
EVALUATION
LEAP MODEL
GUIDANCE DOCUMENTFacilitating Discussions on Planning Future & End-of-Life Care for People with Dementia.
Carmel Collins
Dementia Development Officer
BACKGROUND
1. FACILITATION DISCUSSIONS
2. FUTURE PLANNING *
3. PALLIATIVE & DEMENTIA CARE
4. ASSISTED DECISION MAKING
5. BEREAVEMENT
6. INTELLECTUAL DISABILITIES*
7. ETHICAL DECISION MAKING
8. HYDRATION & NUITRITION
9. PAIN Ax & MANAGEMENT
10. MEDICATION
SUITE OF GUIDANCE DOCUMENTS
Guidance Document to Facilitating Good Communication
1.Communication Key Focus
2.Developed from LR & Committee
3.Themes & Practical Tips
THEME 1. End-of-life Care is an Integral part of a Person’s Future Care
1. Theme reflected in the title
2. HCPs can many anxieties
3. Informally occurring everyday
THEME 2. People with Dementia Retain the Ability to Communicate
1. Channels of communication change
2. Central to provided client centred care
3. Understand the progression of dementia
THEME 3. Good Communication involves all Healthcare Staff
1. Where do PWD reside
2. All disciplines & level of HCP
3. Formal mechanisms established
THEMES 4. Early Conversations on Future & End-of-life Care
1. Early discussions
2. Open dialogue
3. Regularly reviewed
4. Scope of conversations
THEME 5. Planning Future care to Optimise Comfort
1. Beneficial Tx will never be withheld.
2. Tx focuses on optimising comfort
3. Clear communication with person, carers &
MDT
RECOMMENDATIONS ON COMMUNICATION SKILLS
1. Communication provides basic
foundations
2. HCP request further Support
3. Practical tips
RECOMMENDATIONS ON INFORMAL DISCUSSIONS
1. Most conversations occur via informal discussions
2. Can be challenging for HCP to address
3. AFFIRM APPROACH
Excuse me, I am quite worried about my father,
he is eating barely nothing and is losing so
much weight
PRACTICAL TIPS ON FORMAL DISCUSSIONS
1. Focus of formal discussions
2. Eight phase approach
3. Suggested phrasing
PROJECT ADVISORY GROUP
Prof Willie Molloy Dr Suzanne Timmons Mary Manning Marie Lynch
Anne Quinn Carmel Collins Jacinta Kelly Lasarina Maguire
Aideen Lawlor Deirdre Shanagher Jean Barber Cecelia Hayden
Emer Begley Hilary Maher Carmel Hoey Caroline Clifford
