EVIDEM-EOL End of life care for

people with dementia

C Goodman (Hertfordshire), E Mathie (Hertfordshire)C Nicholson (King’s) , S Amador (Hertfordshire)

An intervention to promote integrated working between care home staff and health care practitioners

PRESENTATION

Background/Aims

Phase one overview

Co-design approach: Appreciative Inquiry

Findings

Implications for dementia research

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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

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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

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Dealing with uncertainty and shared decision making key issues for care home staff and visiting health practitioners

CO DESIGN INTERVENTION: APPRECIATIVE INQUIRY (AI)

Roots in action research Assumes in every organisation

something works well 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

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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

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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

: 7

Session 2: Gaining perspective/defining roles in collaborative working

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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

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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%)

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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

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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

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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

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ISSUES

Built on phase one workSkilled facilitationCommitment to participation in

care homeCapturing data and making

causal links

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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 Health15