1. Claire Bamford & Julie Young on behalf of the research team
Improving end of life care through dementia nurse specialists in primary care
Claire Bamford & Julie Young on behalf of the research team
Good afternoon, my name is Marie Poole, and I im presenting some ongoing research from the SEED project.
Im focusing on the work two dementia nurse specialists over the last year and the role they have delivered in supporting people with dementia and their families, towards the end of their live

2. Issues in current end of life care for people with dementia
People with advanced dementia often experience suboptimal end of life care compared to those with cancer with:
inadequate pain control
increased hospitalisation
fewer palliative care interventions

3. SEED programme
The aim of the SEED programme is to support professionals to deliver good quality, community-based end of life care in dementia by:
Identifying aspects of existing end of life care which are effective.
Determining how best to commission and deliver community-based end of life care in dementia.
Developing, piloting and evaluating an evidence-based intervention

4. SEED intervention Evidence-based intervention Literature reviews
Building on research programme funded by Marie Curie
Informed by extensive qualitative research

5. Good end of life care for pwd requires:
1. Timely planning discussions
2. Recognising end of life & providing supportive care
3. Co-ordinating care
4. Working effectively with primary care
5. Managing hospitalisation
6. Continuing care after death
7. Valuing staff & ongoing learning

6. The SEED intervention
To increase the chances of a good death for people with dementia & their families
WHO… Dementia nurse specialist + core intervention team
WHAT… Targeting 7 key components of good quality care
WHERE… Primary care
HOW... Tailored intervention to individual & local context; care resource kit
WHEN... Planning for EOL and at EOL

7. Pilot study 2 DNS appointed
4 practices recruited (2 intervention, 2 control)
Intervention lasted for 12 months
Recruited 62 people with dementia and 42 family carers
12 people with dementia have died
2 people with dementia and one family carer have withdrawn from the study

8. Examples of activities
Individual level
Systems level
Building rapport
Identifying unmet needs & initiating support
Liaising between families, hospital staff & GP
Exploring patient & family preferences for end of life care
Providing bereavement support
Developing a new proforma for the annual dementia review
Providing training for care home staff, practice staff, psychiatry liaison team, Macmillan teams
Facilitating post death reflection meetings at care homes
Enhancing understanding of EHCP among GPs
Developing comfort care plans with care homes

9. Views of people with dementia and carers
“I don't think the doctor would recognise me because I’m very rarely at the doctors, so it wouldn’t be like talking to somebody that does know a bit about you, you know what I mean? [Yes]. They wouldn’t understand how you’re feeling”.
(Patient 3035)

10. Views of professionals
“I think what DNS1 being here has demonstrated to me […] is the impact that proactive work with these dementia patients can have. Some of the patients that she's had, and especially the social situations and the problems that she has just tackled head on, before it's reached crisis point, I'm sure, has prevented some people going into care homes. It's prevented some safeguarding issues. It's prevented, even, admissions to hospitals”. GP 1.1

11. Challenges of nurse specialist role
Unknown role
Recruiting
Support in the role
Evidence based practice
Mission creep

12. Highlights of nurse specialist role
Being embedded in primary care
Merging clinical practice and research
Having time for reflection
Being proactive and forward planning
Opportunity to develop systems

13. Onward Bound!

14. This presentation summarises independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research programme (Grant Reference Number RP- PG ). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.
I would also like to acknowledge our funder - NIHR

15. https://research.ncl.ac.uk/seed/
Thank you
Thank you for listening, and our website is here if you would like to find out more about SEED.