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 Stigma Terminology Service Decision making Skill set

3. Proposals for Action

Policy Service Education Research

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Making Informed Decisions

‘we thought it would be easier to manage if we’d talked about it in advance’

We were prepared for the situation that hit us

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

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’

Peace of MindReducing Anxiety

BENEFITS – PERSPECTIVE OF PEOPLE WITH DEMENTIA AND THEIR CARERS

Source: NCPC UK Difficult Conversations 3

Planning for emergencies

Knowing what to expect at the very end

I think I’d have been a better carer if I’d had

more information

There can be a lot of friction and some families can bicker – helpful to have someone help with discussions and making plans in advance

There was always someone I could

phone, for example with the syringe

driver…. they reassured me

BENEFITS – PERSPECTIVE OF PEOPLE WITH DEMENTIA AND THEIR CARERS

Source: NCPC UK Difficult Conversations 4

Benefits – What is palliative care for people with dementia?

PHILOSOPHY OF CARERecognition of anticipatory and ambiguous loss and bereavement – people with dementia and familiesPlanning for the futureRecognition 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 & nutritionSupport 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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• 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)

Description: Palliative approach in dementia

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Description:Model of Changing CareIHF and HSE 2008

Large oval indicates timing for general palliative care

Shaded oval indicates potential timing of specialist palliative care 8

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 9

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2008

2013

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2013

REPORTS (mostly Irish)

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CHALLENGES - 1

Stigma Palliative care, death & Cancer

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Challenges - 2

Health Care Terminology •Palliative care •End of life care•Terminal care•Supportive care•Advance care directives

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

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Challenges - 3

PALLIATIVE CARE APPROACH All stages

All settingsPerson with dementia, their family, service providers 13

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 PERSPECTIVE1.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 critical3.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 sitesEnd of life as mandatory module

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 messageBridge theory practice gapInvolvement of people with dementia and their carers – what matters to them

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Summary Palliative care is part of dementia careStaff 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 settingsTiming of intervention paced/guided by people with

dementia Research needs to determine benefit for those with

dementia, their carers and service providers 19

Resources and references

• Publications http://hospicefoundation.ie/publications/

• Education Resource What Matters to me – http://hospicefoundation.ie/education-

training/final-journeys/final-journeys-what-matters-to-me/

UK NCPC http://www.ncpc.org.uk/dementia

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