Marie LYNCH St Lukes 23 · IHF Programmes •Palliative Care for All ... PALLIATIVE CARE AND...

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Marie LynchMarie LynchMarie LynchMarie LynchHead of Healthcare ProgrammesHead of Healthcare ProgrammesHead of Healthcare ProgrammesHead of Healthcare Programmes

Living Well with Dementia Living Well with Dementia Living Well with Dementia Living Well with Dementia

Conference Conference Conference Conference

St Luke’s Home, Education CentreSt Luke’s Home, Education CentreSt Luke’s Home, Education CentreSt Luke’s Home, Education Centre

23 April 2015 23 April 2015 23 April 2015 23 April 2015

Presentation Outline

•BACKGROUNDBACKGROUNDBACKGROUNDBACKGROUND• Irish Hospice Foundation

• Policy Context

• Rationale

• CHANGING MINDS PROJECTSCHANGING MINDS PROJECTSCHANGING MINDS PROJECTSCHANGING MINDS PROJECTS• Resources

• Education

• Service Development

• Engagement

IHF Vision & Mission

Our VisionVisionVisionVision is that no one should face death or

bereavement without the care and support

they need

Our MissionMissionMissionMission is to achieve dignity, comfort and

choice for all people facing the end of life.

We do this by addressing, with our partners

and the public, critical matters relating to

death, dying and bereavement in Ireland

IHF Programmes

• Palliative Care for All Palliative Care for All Palliative Care for All Palliative Care for All • Primary Palliative CarePrimary Palliative CarePrimary Palliative CarePrimary Palliative Care

• Hospice Friendly HospitalsHospice Friendly HospitalsHospice Friendly HospitalsHospice Friendly Hospitals

• Bereavement Education and Bereavement Education and Bereavement Education and Bereavement Education and

TrainingTrainingTrainingTraining

• Children's Programme Children's Programme Children's Programme Children's Programme

• Forum on End of Life Forum on End of Life Forum on End of Life Forum on End of Life

• Fundraising Fundraising Fundraising Fundraising

Grant programmes

Population and PolicyPopulation and PolicyPopulation and PolicyPopulation and Policy

41,000

140,000

Irelands dementia population trends

Good end of life care for people with Good end of life care for people with Good end of life care for people with Good end of life care for people with

dementiadementiadementiadementia

RATIONALERATIONALERATIONALERATIONALE

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Good end of life care for people with dementia Good end of life care for people with dementia Good end of life care for people with dementia Good end of life care for people with dementia

Requires additional emphasisRequires additional emphasisRequires additional emphasisRequires additional emphasis

1.1.1.1. Communication skills Communication skills Communication skills Communication skills with people with dementia and families with people with dementia and families with people with dementia and families with people with dementia and families

due to cognition, capacity, lack of diagnosis

2.2.2.2. AssessmentAssessmentAssessmentAssessment of end of life symptoms of end of life symptoms of end of life symptoms of end of life symptoms due to diminishing ability to communicate and co-morbidities

3.3.3.3. Wider MDT Wider MDT Wider MDT Wider MDT involvement involvement involvement involvement

due to complex symptoms & range of specialist involvement

4.4.4.4. Increase in Increase in Increase in Increase in acute events/transitions acute events/transitions acute events/transitions acute events/transitions

for continuity of care transitions

5. Bereavement Bereavement Bereavement Bereavement interventions interventions interventions interventions

Anticipated loss and longer trajectory


End of life care needs of

people with dementia

Care Transitions

Multidisciplinary team involvement

Pain &

other

Symptoms

Communication

Loss and

bereavement


Presentation Outline

•BACKGROUNDBACKGROUNDBACKGROUNDBACKGROUND• Irish Hospice Foundation

• Policy Context

• Rationale

• CHANGING MINDS PROJECTSCHANGING MINDS PROJECTSCHANGING MINDS PROJECTSCHANGING MINDS PROJECTS• Resources

• Education

• Service Development

• Engagement

2013 - 2016

Changing Minds: Three Outcomes

Palliative care Palliative care Palliative care Palliative care

for people with for people with for people with for people with

dementia will be dementia will be dementia will be dementia will be

prioritised in all prioritised in all prioritised in all prioritised in all

care settings; care settings; care settings; care settings;

and more and more and more and more

people will be people will be people will be people will be

supported to die supported to die supported to die supported to die

well at homewell at homewell at homewell at home

Better end of life Better end of life Better end of life Better end of life

care in care in care in care in

residential care residential care residential care residential care

settings for settings for settings for settings for

older people older people older people older people

with a focus on with a focus on with a focus on with a focus on

people with people with people with people with


Increased public Increased public Increased public Increased public

awareness on awareness on awareness on awareness on

death and death and death and death and

dying, with more dying, with more dying, with more dying, with more

people including people including people including people including

those with those with those with those with

dementia, dementia, dementia, dementia,

engaging in engaging in engaging in engaging in

early advance early advance early advance early advance

planning planning planning 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 AheadThink AheadThink AheadThink Ahead

STRATEGIC ENGAGEMENTSTRATEGIC ENGAGEMENTSTRATEGIC ENGAGEMENTSTRATEGIC ENGAGEMENT

Resources

Resources

staff

People with

dementia Families

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RESOURCES RESOURCES RESOURCES RESOURCES ---- People with Dementia & FamiliesPeople with Dementia & FamiliesPeople with Dementia & FamiliesPeople with Dementia & Families

Resources - Families

A A A A new education new education new education new education programme of four 90programme of four 90programme of four 90programme of four 90----

minute sessions, run over four consecutive minute sessions, run over four consecutive minute sessions, run over four consecutive minute sessions, run over four consecutive

weeks, for family members (relatives and weeks, for family members (relatives and weeks, for family members (relatives and weeks, for family members (relatives and

friends) of residents. friends) of residents. friends) of residents. friends) of residents.

1.1.1.1. When someone you care about is in a When someone you care about is in a When someone you care about is in a When someone you care about is in a

nursing home nursing home nursing home nursing home

2.2.2.2. How to have a good visit with a How to have a good visit with a How to have a good visit with a How to have a good visit with a

relative/friend with dementia relative/friend with dementia relative/friend with dementia relative/friend with dementia

3.3.3.3. Family involvement in thinking ahead Family involvement in thinking ahead Family involvement in thinking ahead Family involvement in thinking ahead

and decision making in endand decision making in endand decision making in endand decision making in end----ofofofof----life care life care life care life care

4.4.4.4. When someone you love/know is dyingWhen someone you love/know is dyingWhen someone you love/know is dyingWhen someone you love/know is dying

For info: [email protected] info: [email protected] info: [email protected] info: [email protected]

RESOURCESRESOURCESRESOURCESRESOURCES– Staff

Facilitating discussion on future and end of life care

Advance Care Planning and Advance Healthcare decisions

Medication management

Ethical decision making

Nutrition and Hydration

Bereavement

Pain assessment

PALLIATIVE CARE AND DEMENTIA : PALLIATIVE CARE AND DEMENTIA : PALLIATIVE CARE AND DEMENTIA : PALLIATIVE CARE AND DEMENTIA :

GUIDANCE DOCUMENTS GUIDANCE DOCUMENTS GUIDANCE DOCUMENTS GUIDANCE DOCUMENTS –––– 2015/2016 2015/2016 2015/2016 2015/2016

1

Consultation process open 20 April – 1 May

EDUCATION

Education

Seminars

Training days

National Conference

EDUCATION / EDUCATION / EDUCATION / EDUCATION / seminarsseminarsseminarsseminars

4 regional 4 regional 4 regional 4 regional

seminarsseminarsseminarsseminars� Limerick

� Dundalk

� Waterford

North East (Oct 2015)

1 National Conference 1 National Conference 1 National Conference 1 National Conference

2016 2016 2016 2016

What Matters To Me What Matters To Me What Matters To Me What Matters To Me

A one-day workshop which aims to improve end-of-life care in hospitals/residential

care settings by enhancing communication skills so that staff at all levels are better

able to engage in discussions with residents, throughout their time in the

hospital/care home, about what is really important to them.

Workshop topics include:

• Applying the principles of a hospice approach

• Understanding the issues of ongoing care after death

• Identifying ways to improve communication in end-of-life care with residents and

families

• Applying open and sensitive communication to end of life care.

EDUCATION / EDUCATION / EDUCATION / EDUCATION / training daystraining daystraining daystraining days

18


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Workshop topics: Workshop topics: Workshop topics: Workshop topics:

� EndEndEndEnd----ofofofof----life care, communication and personlife care, communication and personlife care, communication and personlife care, communication and person----

centrednesscentrednesscentrednesscentredness

� Communication Communication Communication Communication –––– what helps and hinderswhat helps and hinderswhat helps and hinderswhat helps and hinders

� The impact of dementia on communication abilityThe impact of dementia on communication abilityThe impact of dementia on communication abilityThe impact of dementia on communication ability

� Models of dementia care and how to communicateModels of dementia care and how to communicateModels of dementia care and how to communicateModels of dementia care and how to communicate

� Tips and techniques for communicating with people Tips and techniques for communicating with people Tips and techniques for communicating with people Tips and techniques for communicating with people

with dementiawith dementiawith dementiawith dementia

EDUCATION / EDUCATION / EDUCATION / EDUCATION / training training training training daysdaysdaysdays

Communicating with People with Communicating with People with Communicating with People with Communicating with People with DementiaDementiaDementiaDementiaA new halfA new halfA new halfA new half----day workshop for staff working in residential careday workshop for staff working in residential careday workshop for staff working in residential careday workshop for staff working in residential care


Service development

Service development

Grants

Dying at home RCC/Journey of Change

� Case studies understanding Case studies understanding Case studies understanding Case studies understanding

how to support people with how to support people with how to support people with how to support people with

dementia to live well and die at dementia to live well and die at dementia to live well and die at dementia to live well and die at

home home home home

� AAAAnalysis of those who receive nalysis of those who receive nalysis of those who receive nalysis of those who receive

IHF night nursing service IHF night nursing service IHF night nursing service IHF night nursing service

Service Development/ Dying at homeService Development/ Dying at homeService Development/ Dying at homeService Development/ Dying at home

2007 2008 2009 2010 2011 2012 2013 2014

Series 1 3 8 12 14 25 50 63 86

0

10

20

30

40

50

60

70

80

90

100

Axis Title

Axis Title

Axis Title

Axis Title

# people with dementia referred to # people with dementia referred to # people with dementia referred to # people with dementia referred to IHF night nursing service IHF night nursing service IHF night nursing service IHF night nursing service

SUPPORTING HOME SUPPORTING HOME SUPPORTING HOME SUPPORTING HOME

DEATHS FOR PEOPLE DEATHS FOR PEOPLE DEATHS FOR PEOPLE DEATHS FOR PEOPLE

WITH DEMENTIAWITH DEMENTIAWITH DEMENTIAWITH DEMENTIA

Need to support residential care centres

meet end of life care needs of residents

and comply with regulations

Service Service Service Service Development/RCCDevelopment/RCCDevelopment/RCCDevelopment/RCC

Onsite facilitation Individual

tailoring for quality

improvement

EOLC toolkit

Education

End of life reviews

Telephone support

End of life toolkit

Online learning and

support

Community links

Service Service Service Service Development / RCCDevelopment / RCCDevelopment / RCCDevelopment / RCC

Target 350 Residential Care Centres South, Dublin, MidWest & North West

IHF South JOC Co-ordinator:

[email protected]

EOLC dementia pathway acute hospital

Good Neighbour scheme – advanced dementia

Communicating end of life and dementia residential care

Understanding the role of SPC in supporting dementia

TALKING MATS – speech and language therapist intervention

Case studies to understand how palliative care helps people with dementia live at home

Service Service Service Service Development/GRANTSDevelopment/GRANTSDevelopment/GRANTSDevelopment/GRANTS

…more info on grantsgrantsgrantsgrants page of IHF website…

www.hospicefoundation.ie

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� Think Ahead is an idea that came from people

like you across Ireland. Regardless of your age, stage of life or level of health, it encourages you to:

� THINK about how well those close to you

would know or understand your wishes if a time

came when you could not speak for yourself because of illness.

� TALK about these wishes with those close to

you and with professionals such as GP, solicitor, accountant.

� TELL the most relevant people in your life about

your wishes and record them so that they can be available if at some stage, for whatever

reason, you are unable to speak for yourself.

� RECORD AND REVIEW

ENGAGEMENT / publicENGAGEMENT / publicENGAGEMENT / publicENGAGEMENT / public

4 Project Groups4 Project Groups4 Project Groups4 Project Groups

Participation Participation Participation Participation

DisseminationDisseminationDisseminationDissemination

REPRESENTATION: REPRESENTATION: REPRESENTATION: REPRESENTATION:

Nursing, Medicine, Palliative care, Nursing, Medicine, Palliative care, Nursing, Medicine, Palliative care, Nursing, Medicine, Palliative care,

Intellectual Disability, Patient Intellectual Disability, Patient Intellectual Disability, Patient Intellectual Disability, Patient

GroupsGroupsGroupsGroups

Public meetings, Public meetings, Public meetings, Public meetings,

consultations, consultations, consultations, consultations, ggggrant funding, rant funding, rant funding, rant funding,

seminars, briefings, seminars, briefings, seminars, briefings, seminars, briefings,

workshopsworkshopsworkshopsworkshops

IIIInformation leaflets, nformation leaflets, nformation leaflets, nformation leaflets,

communiques, website, communiques, website, communiques, website, communiques, website,

contact database contact database contact database contact database


2013 2016

ENGAGEMENT / strategic partners/ sustainability ENGAGEMENT / strategic partners/ sustainability ENGAGEMENT / strategic partners/ sustainability ENGAGEMENT / strategic partners/ sustainability

Changing Minds: Three Outcomes

Palliative care Palliative care Palliative care Palliative care

for people with for people with for people with for people with

dementia will be dementia will be dementia will be dementia will be

prioritised in all prioritised in all prioritised in all prioritised in all

care settings; care settings; care settings; care settings;

and more and more and more and more

people will be people will be people will be people will be

supported to die supported to die supported to die supported to die

well at homewell at homewell at homewell at home

Better end of life Better end of life Better end of life Better end of life

care in care in care in care in

residential care residential care residential care residential care

settings for settings for settings for settings for

older people older people older people older people

with a focus on with a focus on with a focus on with a focus on

people with people with people with people with


Increased public Increased public Increased public Increased public

awareness on awareness on awareness on awareness on

death and death and death and death and

dying, with more dying, with more dying, with more dying, with more

people including people including people including people including

those with those with those with those with

dementia, dementia, dementia, dementia,

engaging in engaging in engaging in engaging in

early advance early advance early advance early advance

planning planning planning 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 AheadThink AheadThink AheadThink Ahead


EVALUATIONEVALUATIONEVALUATIONEVALUATION

LEAP MODEL

IN

CONCLUSION

Acknowledgements

Thank you and QuestionsThank you and QuestionsThank you and QuestionsThank you and Questions

For more information

Marie Lynch

[email protected]

Ph: 01 673 0063

� People with dementia and carers who have

contributed and advised IHF

� IHF Changing Minds Team

� Project Advisory and Governance Groups

� Atlantic Philanthropies

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References

• Givens, J. et al, Grief among family members of nursing home resident with

advanced dementia American J Geriatric Psychiatry (2011) 19:6

• Van Der Steen, J. et al, White paper defining optimal palliative care in older

people with dementia Palliative Medicine (2013)

• Illiffe, S. et al Modelling the landscape of palliative care for people with dementia

BMC Palliative Care 2013 12:30

• Hughes, J. What does palliative care mean and does dementia need it? Alzheimer

Australia Conference 2009

• Palliative Care and Dementia consensus in North Tyneside 2006

Marie LYNCH St Lukes 23 · IHF Programmes •Palliative Care for All ... PALLIATIVE CARE AND...

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