enhancing the quality of dementia care…. from diagnosis to
TRANSCRIPT
Enhancing the quality of dementia care….from diagnosis to end of life
Professor Louise Robinson Regius Professor of Ageing, Newcastle University
Background
• In UK, dementia is one of the most common causes of death • No one professional responsibility; ALL groups lacking in confidence
• Limited UK research to inform practice • 2018 NICE guidelines for dementia care: evidence gaps for end of life care
• SEED: NIHR programme grant (2014-20)
• Aim: To support professionals to deliver good quality, community-based end of life care in dementia.
WS1: Literature reviews
WS2: Qualitative
studies
WS3a: Intervention development
WS4:SEED
Intervention
Pilot trial
WS3b: refinement
WS5: Healtheconomics
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-0611-20005). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.
https://research.ncl.ac.uk/seed/
SEED outputs: • Amador S, Goodman C, Robinson L, Sampson E. UK end-of-life care services in dementia, initiatives and sustainability:
results of a national online survey. BMJ Supportive and Palliative care October 2016 DOI:10.1136/bmjspcare-2016-001138.
• Bamford C, Lee R, McLellan E et al. What enables good end of life care for people with dementia? A multi-method qualitative study with key stakeholders. BMC Geriatrics 2018 18:302 https://doi.org/10.1186/s12877-018-0983-0
• Gotts ZM, Baur N, McLellan E, Goodman C, Robinson L, Lee RP. Commissioning care for people with dementia at the end of life: a mixed-methods study. BMJ Open, 2016 6(12) pp. e013554.
• Hill S, Mason H, Poole M, Vale, L, Robinson L. What is important at the end of life for people with dementia? The views of people with dementia and their carers. International Journal of Geriatric Psychiatry August 2016, DOI:10.1002/gps.4564.
• Lee RP, Bamford C, Exley C, Robinson L. Expert views on the factors enabling good end of life care for people with dementia: a qualitative study. BMC Palliative Care 2015;14:32. DOI:10.1186/s12904-015-0028-9.
• Lee RP, Bamford C, Poole M et al. End of life care for people with dementia: views of health professionals, social care service managers on key requirements for good practice. PLOS ONE 12(6): June 2017 e0179355.DOI:doi.org/10.1371/journal.pone.0179355
• Macdonald A, Neves S, McLellan E, Poole M, Harrison-Dening K, Tucker S, Bamford C, Robinson L. End of life care: resources to strengthen support. Journal of Dementia Care. 26 (1) 28-31 January/February 2018.
• Poole M, Bamford C, McLellan E, Lee RP, Exley C, Hughes JC, Harrison-Dening K and Robinson L. End-of-life care: A qualitative study comparing the views of people with dementia and family carers. Palliative Medicine 12.10.2017 DOI: 10.1177/0269216317736033
The SEED intervention
To increase the chances of a living well with advanced dementia and a good death for people with dementia & their families
• WHO… Dementia nurse specialist + core team
• WHAT… Target 7 key aspects of good quality care
• WHERE…Primary care
• HOW... Tailored intervention to individual & local context; care resource kit
• WHEN... Planning for EOL and care at EOL
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
SEED pilot trial
• 2 Dementia nurse specialists; 4 GP practices (2 intervention; 2 control)
• Patients identified/recruited from GP dementia registers
• People living at home, in residential and nursing care
• People with or without family support
• People with dementia towards end of life or diagnosis in last 2 years
• Trial duration 16 months + embedded process evaluation
• Participants
• 62 people with dementia and 42 family carers• 37 pwd and 25 family carers in intervention practices
• 25 pwd and 17 family carers in control practices• 12 people with dementia have died ; 2 PWD and 1 family carer withdrawn from the study
Focus on the seven themes (contacts per dyad)
Joint working with professionals
0 2 4 6 8 10 12
GP
Pharmacist
District nurse
Mental health services
PAM
Social services
Hospital staff
Dementia adviser/Admiral Nurse
MDT
Palliative care meeting
Hospice
Practice manager
Site 3 Site 1
Examples of activities at a systems level
• Introduced a new proforma for annual dementia review
• Provided training for care home, practice staff, psychiatry liaison team, Macmillan teams
• Facilitated post death reflection meetings at nursing home
• Worked with care homes to develop comfort care plans
Key findings• Die well with dementia….. Live well with dementia
• Intervention is applicable and relevant across whole post diagnostic pathway
• But did we reinvent the wheel?
• Commissioning in crisis?• Constant state of flux; lack of integration; unsupported and ill-prepared; short term funding
• Appropriate outcomes to measure new services and care models?
• AND…NICE dementia care guidance (2018)• People with dementia - named ‘point of contact/named lead professional’
https://www.journalslibrary.nihr.ac.uk/pgfar/pgfar08080/#/abstract
Living well ….. Dying well with dementia
PriDem programme (2018-22)Primary care-led efficient, integrated and sustainable post diagnostic Dementia care
1. Global evidence + national mapping2. Current practice: user/provider views3. ‘Good practice’ model development 4. Testing in ‘real world’ settings5. Economic evaluation
6. Impact on policy and practice‘Dementia Care Community’ (PPPI)
Team: UCL, Manchester & Brighton Universities, London
School of Economics, Dementia Care
Results• 23 papers: 4 countries (USA, Germany, Netherlands, Singapore)
• 10 studies (9 interventions): 5 RCTs and 4 controlled studies
• 4 types of Primary Care (PC) models
• PC provider led; PCP-led with specialist care; PCP case management; Integrated PC memory clinics
• PCP nurse case management model most promising impact on BPSD, carer burden & distress, care costs
(Specialist nurse: care-coordinator/named lead professional)
Qualitative studies
Key stakeholder viewsCommissioners, providers, managers (n=61)
Good practice: 6 case studies Specialist dementia nurse in general practice
GPs + extended role (GPWERs) across a CCG
Third sector community memory support workers
Secondary care enhanced memory assessment service
Secondary care step up/down models + GP practices (x2)
‘FRAGMENTATION & FRAGILITY’ and ‘INEQUALITY & INSTABILITY• Huge variability in provision –especially NICE recommendations
• Funding major challenge to sustainability
• Lack of integration: duplication of effort and resource
• Primary care concerns: lack of capacity, skills and willingness
• Practical issues: lack of shared care pathways; data sharing; specialist access
PriDem: core components post diagnostic care
Supporting people with dementia
Maintaining and/or improving cognition
Maintaining independence & managing risk
Developing strategies for living with dementia
Supporting adjustment & emotional wellbeing
Social prescribing
Supporting carers
Training for carers
Carer adjustment & emotional wellbeing
Assessment & review of carer needs
Supporting couples /families/dyads
Practical support
Support with daily living and social activities
Information provision
Safeguarding & advocacy
Monitoring and review
Regular dementia review, monitoring & managing non-
cognitive symptoms
Supporting physical health
Planning & decision making for present & future needs
Joining up the pathway
Managing transitionsCare co-ordination
Diagnostic review Named point of contact
Rapid/timely access to support when needed
PriDem intervention
WHO: Dementia clinical expert - nurse specialist
supported by a local multi-disciplinary team of existing generalist/specialist staff (e.g. GP, nurse, pharmacist, dementia advisor, social prescriber), linked into social care and third sector resources
WHERE: Primary care network (40,000 patients)
WHEN: Post diagnosis to end of life
WHAT: Focus on 3 key areas:
• Building capacity: supporting non-specialists to deliver dementia care and support
• Improving systems: formalized, integrated delivery of evidence based support
• Personalised care and support; meet the complex needs of with people with dementia and their informal carers
HOW: Dementia care pathway (NICE + PriDem components of care)
- Baseline mapping (focus on transitions: service user and provider)
- Clarification of roles/responsibilities; mutually agreed final LOCAL DCP
