1. in diagnostic memory services
Advance care planning
in diagnostic memory services
Dr Juliette Brown, East London NHS FT
for East Midlands Mental Health Clinical Network 30 March 2017

2. Process of discussion in a life limiting illness
Wishes and views on future care
Formalised in
Advance statement
Advanced decision (to refuse treatment)
Lasting Power of Attorney

3. Evidence base Planning improves end of life care
(Tierney et al 2001; Wright et al 2008; Detering et al 2010)
ACP leads to improved knowledge and delivery of people’s wishes (Detering et al 2010)
‘Opportune window’ before capacity is lost and communication difficult (O’Kelly et al, 2015) – but ACP can still go on via LPA / with carers / in best interests
And provide a better experience for carers
(Wright et al, 2008; Detering et al 2010)

4. Evidence of benefits
Numerous challenges associated with dementia and ACP (Robinson et al, 2013)
But can deliver:
Sense of control and autonomy (O’Kelly et al, 2015)
Less anxiety (Poppe et al, 2013)
Reduced sense of being a burden to others (O’Kelly et al, 2015)
Better adjustment to diagnosis (Brown, 2016)

5. Why in memory services?
When no-one feels confident or experienced enough to start these conversations
And everyone hopes someone else is doing it
And everyone worries about causing distress and cultural insensitivity
And we are not resourced or commissioned to provide post diagnostic care…

6. Why in memory services?

7. Why in memory services? Feels unsupported after diagnosis
Wants information and control over decisions
Will present many opportunities for ACP but not while she’s in contact with services
May not see another professional with your skills for years
Has a right to participate in decisions while she can

8. Using a behavioral change model to deliver ACP in MS
Specialist training
(Conversations for Life)
- for 35 staff –
provided motivation,
understanding of the issue,
increased confidence
and knowledge.
Service user involvement
in design of project
Clarity about what was required
Series of reflective practice sessions
Testing ideas and approaches together.
Tackling obstacles.
Phase 1
Phase 2
Phase 3
Phase 4
Motivation and understanding
Sustainability
Competence
Opportunity
Practice sharing
across trust
and externally
Recognition of
achievement
Devolved champions
Local systems to embed
into practice
Opportunities to provide intervention identified in teams
Shared resources provide stimulus to initiate conversations
Feedback loops

9. Starting a conversation
Identify who has capacity
Clinician records if not
Capacity for ACP forms
part of feedback report
Everyone with capacity gets information
NCPC leaflet
Phase 1
Phase 2
Phase 3
Phase 4
Assume capacity at feedback
Follow up
Information at feedback
Offer further information
Local champions
Offer more detailed
follow up
Meet to explain AS,
ADRT, support with LPA
Have a template to
structure conversation
Identify those looking for further information
From all parts of the pathway
Signpost and / or refer

10. Benefits Empowerment Permission to start conversations
Surfacing psychological needs
Remaining person centred
Reducing conflict in families
Getting involved in post diagnostic support

11. Finally Value in early discussions
The start of living better with dementia
Can’t improve EoL care without people with dementia being involved
Memory services have a role to play
Don’t send people away without the tools they need
ACP integral to care planning

12. References
Brown, J. Advance care planning in dementia. The Lancet Psychiatry, 2015, Volume 2 , Issue 9 ,
Brown, J. Self and identity over time: dementia. J. Eval. Clin. Pract., 2016, doi: /jep
O'Kelly, A, Howarth, G, Richards, G et al. Advance care planning for end of life care. The Journal of Dementia Care (London). March/April 2015; 23: 2
National Council for Palliative Care.
National Council for Palliative Care. Planning for your future care leaflet:
NHS Choices Advance Statements:
Office of the Public Guardian:
Poppe M, Burleigh S, Banerjee S. Qualitative evaluation of advanced care planning in early dementia (ACP-ED). PLoS One2013;8:e60412
Robinson L, Dickinson C, Rousseau N, Beyer F, Clark A, Hughes J, et al. A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia. Age Ageing2012;41:
Robinson L, Dickinson C, Bamford C, Clark A, Hughes J, Exley C. A qualitative study: professionals’ experiences of advance care planning in dementia and palliative care, “a good idea in theory but . . .” Palliat Med2013;27:401-8.
Sampson, EL and Burns, A. Planning a personalised future with dementia: ‘the misleading simplicity of advance directives’. Palliat Med. 2013; 27: 387–388
Sampson EL, Gould V, Lee D, Blanchard MR. Differences in care received by patients with and without dementia who died during acute hospital admission: a retrospective case note study. Age Ageing Mar;35(2): Epub 2006 Jan 11.
Skills For Health training:
Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA2008;300:

13. Thanks to: Dr Anna Moore, Director, Integrated Mental Health Programme UCL Partners; Dr Caroline Stirling, Clinical Lead and Consultant in Palliative Medicine, End of Life Care Lead UCLPartners ;Laura Stuart Neil, UCLPartners; Dr Amar Shah, Associate Medical Director, East London NHS Foundation Trust; Dr Kevin Cleary, Medical Director, East London NHS Foundation Trust; Neil Ralph, Anthony Senner and James Cain at HENCEL. At City and Hackney: Dr Sandra Evans, Richard Reynolds, Dr Emma Teper, Nick Mooney, Marianne Roots, Mahmood Dilloo, Ahmet Karabiyikli, Sameer Joomun, Steve Reading, Martyn Cooper, Fatima Kamara, Perpetua Ntulila, Dr Kapila Sachdev. At Newham: Dr Tom Smith, Ruth Lisk, Sipho Malinga, Alex Lewis, Adam Fyffe, Pauline Davis, Lesley Smith, Dr Mina Bobdey, Claire Smith. At Tower Hamlets: Corinne Drummond, Leores Britanico, Jonny Stockdale, Mary-Ann Tait, Sam Ahulu, Veronica Samuel , Fatima Begum, Christine Hopkirk, Dr Nick Bass. Dr Cate Bailey, Sarah Mills and Jean Campbell. Dr Hugo De Waal, Ruth Evans, Katie Nichol, Strategic Clinical Network for Dementia. Ken Courtney at Barnet, Enfield and Haringey Mental Health Trust. Suzanne Joels and Emily Van der Pol at Camden and Islington NHS Foundation Trust. Stephen O’Connor, Joanne Rodda, Janet Carter and Stephen Clements at North East London NHS Foundation Trust. Charles Olujugba at South Essex Partnership Trust.