National Dementia Strategy
Working Group
End of Life Care for People with Dementia:
Key Challenges and Proposals
Marie Lynch, Programme Development Manager
marie.lynch@hospicefoundation.ie
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Introduction
1. Background
 Benefits
 Definitions/descriptions
 Context
2. Key Challenges
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3. Proposals for
Action
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Policy
Service
Education
Research
Stigma
Terminology
Service
Decision making
Skill set
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BENEFITS – PERSPECTIVE OF PEOPLE WITH DEMENTIA
AND THEIR CARERS
Making Informed Decisions
We were prepared for the
situation that hit us
Reducing Anxiety
‘we thought it would be easier
to manage if we’d talked about it
in advance’
Peace of Mind
I’m happy that mums wishes will
be carried out and that its all so
comfortable and that she is
comfortable with it too’
Getting on
with living
Source: NCPC UK Difficult Conversations
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’
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BENEFITS – PERSPECTIVE OF PEOPLE
WITH DEMENTIA AND THEIR CARERS
Planning for
emergencies
There was always
someone I could
phone, for example
with the syringe
driver…. they reassured
me
There can be a lot of friction and
some families can bicker – helpful to
have someone help with discussions
and making plans in advance
Knowing what
to expect at
the very end
Source: NCPC UK Difficult Conversations
I think I’d have been a
better carer if I’d had
more information
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Benefits – What is palliative care
for people with dementia?
PHILOSOPHY OF CARE
 Recognition of anticipatory and ambiguous loss and bereavement – people with
dementia and families
 Planning for the future
 Recognition of support that staff need to deliver quality end of life care
 Developing this approach as a baseline, will support the care that all people with
life limiting disease will receive
 Ascending level of specialisation – approach, generalist, specialist
SERVICE INTERVENTION
 Assessment and treatment of pain & symptoms (under-detected in people with
dementia)
 Advice re hydration & nutrition
 Support decision making re potentially burdensome interventions
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Definition: Palliative Care
Improves the quality of life of patients and their
families facing problems associated with life
threatening illness, through the prevention and relief
of suffering by means of early identification,
impeccable assessment and treatment of pain and
other symptoms that may be physical, spiritual and
psychosocial.
It is applicable early in the course of an illness, in
conjunction with other therapies that are intended to
prolong life
REF World Health Organisation 2002
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Description: Palliative approach in dementia
• Located in mainstream services, led by dementia experts with
support as required from Specialist palliative care(ASI & IHF Building
Consensus 2012)
• 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 (ACH Australia
2009)
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Description:Model of Changing Care
IHF and HSE 2008
Large oval indicates timing for general palliative care
Shaded oval indicates potential timing of specialist palliative care
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Description Model of Changing Care
European Association of Palliative Care
REF: Palliative Medicine 2013 Van Der Steen et al:
Defining optimal care in older people with dementia
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REPORTS
2012
2011
2013
(mostly Irish)
2012
2001
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CHALLENGES - 1
Stigma
Palliative care, death &
Cancer
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Challenges - 2
Meaningful terms/words
for people with dementia
and their families
• What is important to
person with dementia
• Pain, fears, anxiety,
future
• Care transitions
• Continuity
• Safety
V
Health Care
Terminology
• Palliative care
• End of life care
• Terminal care
• Supportive care
• Advance care
directives
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Challenges - 3
PALLIATIVE CARE APPROACH
All stages
All settings
Person with dementia, their family, service providers
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Challenges - 4
Decision making
Confusion in the sector and in society regarding
where responsibility lies for decision making at
end of life care
Collaborative working
Staff working with people with who have
palliative care needs require access to specialist
advice and support (IHF 2008, ASI & IHF 2012)
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PROPOSALS FOR ACTION
POLICY PERSPECTIVE
1. More emphasis of end of life care in Dementia
Strategy Absence of End of Life Strategy in Ireland
requires
2. Action points in strategy refer benefit of and need for
to palliative care approach throughout disease
journey - GP and Primary Care role critical
3. Public engagement and dementia friendly
communities to address
– Advance Care Planning
– Clarity re EOLC decision making responsibilities
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PROPOSALS FOR ACTION
SERVICE
1. COLLABORATIVE ELEMENT ESSENTIAL for Quality
improvement initiatives address end of life care for
people with dementia –
2. DOVETAIL EXISTING PROGRAMMES - IHF Changing
Minds Programme: Promoting Excellence in End of
Life care (funded from Atlantic Philantrophies)
3. Capture learning from HIQA guidance, monitoring
and regulation in Hospitals, Residential care and
Primary care – and feedback loop to ensure
effectiveness of regulation
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PROPOSALS FOR ACTION
EDUCATION
Strategy should address
 education and training for Carers and people with dementia
 Staff release issues
 Access to technology for e learning
 Leadership to promote learning across specialities and sites
 End of life as mandatory module
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Cross reference
IHF Changing Minds education and staff development programme
DCU/HSE Dementia Champions
HSE Palliative care competence framework
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PROPOSALS FOR ACTION
RESEARCH
• Address benefit of interventions and outcomes to
people with dementia and their families
• Impact of HIQA regulations
• Translational research
Key message
Bridge theory practice gap
Involvement of people with dementia and
their carers – what matters to them
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Summary
 Palliative care is part of dementia care
 Staff need to be skilled with framework, language
and assessment tools to address palliative care needs
– flexible methods/terminology – to ensure patient
centeredness
 Requires collaboration across teams and settings
 Timing of intervention paced/guided by people with
dementia
 Research needs to determine benefit for those with
dementia, their carers and service providers
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Resources and references
• Publications
http://hospicefoundation.ie/publications/
• Education Resource What Matters to me –
http://hospicefoundation.ie/educationtraining/final-journeys/final-journeys-whatmatters-to-me/
UK NCPC http://www.ncpc.org.uk/dementia
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