Marie Lynch, Orla Keegan, Mary Lovegrove, Jackie Crinion,

Sharon Foley, Kathy McLoughlin, Caroline Lynch

International Congress on Palliative Care

Montreal

11 Sept 2014

Irish Hospice Foundation - Dementia Population

- Policy Context

41,000

140,000

Awaiting Publication of Irish

National Dementia Strategy

2014

Good end of life care for people with dementia

REQUIRES ADDITIONAL EMPHASIS

1. Communication skills with people with dementia and families (PWD & F)

due to cognition, capacity, lack of diagnosis

2. Assessment of end of life symptoms due to diminishing ability to communicate and co-morbidities

3. Wider MDT involvement due to complex symptoms & range of specialist involvement

4. Increase in acute events/transitions for continuity of care transitions

5. Bereavement interventions (PWD & F)Anticipated loss and longer trajectory

End of life care needs of people with dementia

Care Transitions

Multidisciplinary team involvement

Pain & other

Symptoms

CommunicationLoss and

bereavement

2013 - 2016

Three Outcomes

Palliative 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,

briefings, workshops

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

Funding FOR INNOVATION & EVIDENCE BASED PRACTICE

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

2007 2008 2009 2010 2011 2012 20130

10

20

30

40

50

60

70

38

12 14

25

50

63

2010 2011 2012 20130

5

10

15

20

25

30

35

40

45

50

68

15 15

7

15

34

45

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

Ensuring good end-of-life care by giving staff the confidence and the competence to change their thinking and practice through

• End-of-Life Care Training Workshops• Conferences and large-group presentations• Educational ‘bundles’

– Including slide presentations, – Film clips and animated videos, – Downloadable resources,– Online support

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

End of life care needs of people with dementia

Care Transitions

Multidisciplinary team involvement

Pain & other

Symptoms

CommunicationLoss and

bereavement

IN CONCLUSION