National Dementia Strategy Working Group

1. 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

2. 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

3. BENEFITS – PERSPECTIVE OF PEOPLE WITH DEMENTIA AND THEIR CARERS We were prepared for the situation that hit us Making Informed Decisions ‘we thought it would be easier to manage if we’d talked about it in advance’ Reducing Anxiety 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’ 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’ Getting on with living Source: NCPC UK Difficult Conversations

4. BENEFITS – PERSPECTIVE OF PEOPLE WITH DEMENTIA AND THEIR CARERS Planning for emergencies 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 Knowing what to expect at the very end I think I’d have been a better carer if I’d had more information Source: NCPC UK Difficult Conversations

5. 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

6. 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

7. 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)

8. 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

9. 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

10. REPORTS (mostly Irish) 2013 2012 2013 2012 2011 2008 2008 2001

11. CHALLENGES - 1 Palliative care, death & Cancer Stigma

12. 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

13. Challenges - 3 PALLIATIVE CARE APPROACH All stages All settings Person with dementia, their family, service providers

14. 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)

15. PROPOSALS FOR ACTION POLICY PERSPECTIVE • More emphasis of end of life care in Dementia Strategy Absence of End of Life Strategy in Ireland requires • Action points in strategy refer benefit of and need for to palliative care approach throughout disease journey - GP and Primary Care role critical • Public engagement and dementia friendly communities to address • Advance Care Planning • Clarity re EOLC decision making responsibilities

16. PROPOSALS FOR ACTION SERVICE • COLLABORATIVE ELEMENT ESSENTIAL for Quality improvement initiatives address end of life care for people with dementia – • DOVETAIL EXISTING PROGRAMMES - IHF Changing Minds Programme: Promoting Excellence in End of Life care (funded from Atlantic Philantrophies) • Capture learning from HIQA guidance, monitoring and regulation in Hospitals, Residential care and Primary care – and feedback loop to ensure effectiveness of regulation

17. 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 • Cross reference • IHF Changing Minds education and staff development programme • DCU/HSE Dementia Champions • HSE Palliative care competence framework

18. 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

19. 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

20. 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