EVIDEM-EOL End of life care for people with dementia

1. EVIDEM-EOLEnd of life care for people with dementia An intervention to promote integrated working between care home staff and health care practitioners C Goodman (Hertfordshire), E Mathie (Hertfordshire) C Nicholson (King’s) , S Amador (Hertfordshire)

2. PRESENTATION • Background/Aims • Phase one overview • Co-design approach: Appreciative Inquiry • Findings • Implications for dementia research

3. Aims of EVIDEM EOL • Phase1 to explore and document the need for support and end of life care of older people with dementia living in a care home (CH) with no on site nursing • Phase2 (based on phase one findings) develop an intervention that encourages integrated working between care home providers and primary care health services to provide end of life care for older people with dementia

4. PHASE 1 (2008-2010) • 133 older people w/ dementia living in 6 care homes; • 27 deaths (20.3%) over 18 months; • Majority had seen a general practitioner (GP) and/or district nurse (DN) at least once • Multiple Pathways to dying • EOL trajectories unclear to CH staff, family members and visiting health practitioners • Palliative care tools (e.g. GSF, Liverpool Care Pathway) seldom used Dealing with uncertainty and shared decision making key issues for care home staff and visiting health practitioners

5. CO DESIGN INTERVENTION: APPRECIATIVE INQUIRY (AI) • Roots in action research • Assumes in every organisation something workswell • Asking unconditional questions to produce stories of individuals and organisations at their best • Stories discussed to create new ideas that support create change • Conceptualised as an AI cycle

6. ESTABLISHING CAPABILITY • Feedback of phase one findings to 6 care homes • 3 of the 6 care homes and linked NHS staff = intervention • 3 Appreciative Inquiry (AI) sessions were held in each of the care homes • Sessions held over a period of 6 months from January to June 2011

7. Three sessions • Stories of excellence and aspirations for what good end of life care for people with dementia might look like • Appreciate the world from another point of view including the person with dementia (NB multiple views) • Reviewing progress and strategies for change :

8. Session 2: Gaining perspective/defining roles in collaborative working

9. Participant developed tools • Rapid engagement between CH and visiting NHS staff unused to working together greater understanding of respective roles in caring for the older person with dementia • AI enabled participants to develop/adapt together the following tools: • A script for discussing EOL wishes with relatives • A tool to support discussions with out of hours services • A GP led implementation and audit of advance care planning in collaboration with care staff • Pain management and use of sedatives was an issue from phase one findings but participants did not choose to address symptom management for people with dementia

10. IMMEDIATE CHANGES • Quality of contacts (e.g. coffee mornings for district nursing service) and accessibility (direct lines to DN) • Focus on EOL on routine GP visits to the care home (GP & CH manager joint reviews of residents rather than only those who need immediate attention) • Care home staff, family and GP involvement in EOL discussions • Recognition of care home staff knowledge and capability (DNs attending Dementia training at care home) • EOL framework utilisation and palliative support tools(e.g. East of England DNACPR protocol) Economic evaluation (n=28 residents who participated in Phases 1 & 2; % change in terms of median costs) • Significant decrease in Hospital contacts and associated costs (-45%) • No significant change in Primary care contacts and associated costs (+10%)

11. LONG TERM CHANGES/CARE HOME CULTURE • Changed superficial unchallenging conversations • Allowed professional vulnerability & encouraged trust • Views of a care home’s remit changed • Continuity and collaboration on planning and discussing EOL care

12. So…. The intervention supported a shift in care home culture that could mitigate uncertainties inherent to end-of-life care of older people with dementia

13. AI SYNERGY WITH DEMENTIA RESEARCH • Avoids a deficit model of care; works with existing capacity and people’s stories • Avoids stigma and stereotyping of poor care • Focus on relationships not hierarchies; co-design and negotiated outcomes with the care home at the centre • Focus on continuity and review • Enables research across organisations and settings • Change oriented

14. ISSUES • Built on phase one work • Skilled facilitation • Commitment to participation in care home • Capturing data and making causal links

15. Acknowledgements Many thanks to residents, care staff & NHS staff who gave up their time to take part in this research For more information contact c.goodman@herts.ac.uk or visit www.evidem.org.uk This study has received financial support from the National Institute for Health Research (NIHR) Programme Grants for Applied Research funding scheme. The views and opinions expressed therein do not necessarily reflect those of Central & North West London NHS Foundation Trust, the NHS, the NIHR or the Department of Health