Palliative care in dementia
Professor Liz Sampson,
MCPCRD Division of Psychiatry, UCL, London
Liaison Psychiatry, North Middlesex University Hospital
Overview
• Update on epidemiology-WHO?
• Settings-WHERE?
• Palliative care need in people with dementia-WHY?
• Implementing in practice-HOW?
Dying with dementia as a global issue
Sleeman et al. 2019
Place of death for people with dementia
National End of Life Care Intelligence Network Atlas of Variation for Palliative and End of Life Care in England
Future projections of need
http://www.lse.ac.uk/cpec/assets/documents/Working-paper-5-Wittenberg-et-al-dementia.pdf
November 2019
2019 2020 2025 2030 % growth
Total
England
747,962 769,204 898,467 1,046,138 39.9%
Mild 107,084 108,349 118,945 136,142 27.1%
Moderate 206,277 198,928 210,080 235,571 14.2%
Severe 434,600 461,926 569,442 674,424 55.2%
Update on care homes
The PACES (Palliative Care for Older People) programme
• EU-funded project (2014–2019)
• Compare effectiveness of health care systems with and
without formal palliative care structures
• Investigates the impact ‘Six steps to Success’ intervention on
patient, family and staff outcomes and on cost-effectiveness in
a cluster-controlled trial
• PI Professor Lieve Van den Block (VUB)
• Stratified sample from 322 care homes n=1384 residents
• 80% dementia
Quality of dying with dementia
Palliative care policies or practice
frameworks for nursing homes are
not sufficient for high quality of
end-of-life care.( Pivodic et al 2018)
Care towards end of life
Thange et al 2018
Physician visits Last 3 months of life
• Poland 15
• England 5
Last week of life
• Netherlands 4
• England 1 (Oosterveld- Vlug et al. 2018)
Andreasen 2019
Prescribing
ACP
PACE intervention trial to improve care
• PACE Steps to Success Program
• Multicomponent intervention program to integrate basic non-specialist palliative care in nursing
homes
(1) advance care planning with residents and families
(2) assessment, care planning, and review of resident needs and problems
(3) coordination of care via monthly multidisciplinary palliative care review meetings
(4) high-quality care with a focus on pain and depression
(5) care in last days of life
(6) care after death
• Primary resident outcome was comfort in the last week of life End-of-Life in Dementia Scale
Comfort Assessment while dying (EOLD-CAD)
• The secondary resident outcome was Quality of Dying in Long Term Care (QOD-LTC).
• 78 nursing homes in 7 countries over 1 year, 36 control and 37 interventionVan den Block et al. 2019
PACE results
• Residents' comfort in the last week of life did not differ intervention vs. control
• Staff in the intervention group -significantly better knowledge of palliative care,
but the clinical difference was minimal
• Required context specific adaptation
• Multiple components, too complex
• Studies targeting specific care tasks more likely to produce positive outcomes
than those requiring broader practice changes such as the PACE program.
Hence, it might be better to focus on 1 component at a time (Low et al. 2015)
Agitation and quality of life
WHELD (Ballard et al 2018)
Intervention: Person-centred care and psychosocial
incorporating an antipsychotic review
Method: randomised controlled cluster trial WHELD vs
TAU in people with dementia living in 69 UK nursing
homes
Delivery: staff training, ongoing delivery through a care
staff champion model.
Primary outcome: QoL (DEMQOL-Proxy) 2 years
Secondary outcomes: included agitation (CMAI)
Key findings: statistically significant improvement in
DEMQoL-Proxy, CMAI and NPI, greatest in people with
moderately severe dementia
MARQUE (Livingston et al 2019)
Intervention: Managing Agitation and Raising Quality of
Life (MARQUE) manualised staff training intervention
Method: parallel-group, cluster-randomised controlled
trial in people with dementia living in 20 care homes
across England.
Delivery: supervised graduate psychologists delivered
manual to staff in six interactive sessions.
Primary outcome: CMAI at 8 months
Secondary outcomes: DemQol-Proxy
Key findings: no significant differences in mean CMAIor
Dem-QoL proxy scores
Namaste care
• Complex dementia intervention
• Proactive, structured care focused on • enhancements to the physical environment
• comfort assessment and management
• ongoing sensory engagement
• personalised activities to reflect an individual’s life story and
preferences
• delivered in a group context
• Two hours per day, 7 days per week
• Can be delivered by volunteers in a range of settings
Research on understanding Namaste care
• Mechanisms of action
– Activities that enabled moments of connection for people with advanced dementia
– Structured access to social and physical stimulation, equips care home staff to cope
effectively with complex behaviours and variable responses, provides a framework for
person-centred care (Bunn et al 2019)
• What are the active ingredients ?
– Aromas, interacting with animals and dolls, background, singing, personalised music,
nature, lighting, touch/massage (Brooker et al 2019)
• Developing research on effectiveness
– Feasibility study in 8 English nursing homes (Froggatt et al. 2019)
– No nursing home delivered intervention 2x day, 7 days/week. Mean session 1.3 hours. Ho
• Cost models
– £8-£10 more per resident per 2-hour session than a comparable period of usual care. (Bray et
al 2019)
• Tool developed from palliative care field
• Focus on symptoms and concerns important to people with dementia and their
families
• Comprehensive – common symptoms and concerns e.g. pain, swallowing,
depression, anxiety, at peace, swallowing problems, skin breakdown
• Acceptable and easy to understand by care home staff without clinical training
New tools to assess need
IPOS-Dem
IPOS-Dem
Consecutive assessments: 1 month between assessments
IPOS-Dem outcomes
• Piloted in 3 RESIDENTIAL homes over 12 weeks
• Feasible for staff to collect
– Improved observation and awareness of residents
– Collaborative assessment
– Comprehensive ‘picture of the person’
– Systematic record keeping
– Improved review and monitoring, care planning
– Facilitated multi-agency communication. Potential benefit included improved symptom
management, improved comprehensive care (Ellis-Smith et al 2018)
• Implementation studies in progress (EMBED-Care)
New UK care models
NHS England 2016
Enhanced health care in care homes
• What works?
(i) investment in care home-specific work that legitimises and values work with care
homes
(ii) relational working which over time builds trust between practitioners
(iii) care which ‘wraps around’ care homes
(iv) access to specialist care for older people with dementia (Gordon et al 2018)
• Greater utilisation of GP resource where specifically commissioned (Gordon et al
2018)
• Health 100 programme
– Single GP practice to all residents
– Access to experts in complex needs- OAPsych, geriatrics
– Focus on EoLC- new approaches to managing end of life care
– Emergence admissions decreased 36% , bed days decrease 53%, biggest reductions at end
of life
Hospice enabled dementia care
ICL• Review notes
• Holistic assessment of resident with input from care home staff and family/ NOK
Core meeting• Weekly meeting with
ICL, GP, CH manager/nurse
• Discuss ICL assessment
• Agree to care plan
MDT• Monthly meeting: CH
nurses and managers, GP, Geriatrician, palliative care, mental health, ICL
• Discuss complex issues
ICL provides staff with informal and formal training and support
Moore et al. 2017, Sampson et al. 2018
Implementing in practice
• Overcame barriers1) Political and economic environment
2) Organizational
3) Professional care provider level
• Started October 2019 London Borough of Ealing (popn
350,000)
• 18 nursing homes-approximately 1000 residents
• Delivered by two full time nurses
• In the first 2 months:• 84 residents detailed needs assessment with IPOS-Dem,
discussion, care planning
• adapted to local context, “Coordinate my Care” electronic
advance care planning register
• Independently evaluated
The current reality
• Huge future increases in need
• Complex people require clinical and social expertise
• Nursing and residential homes require external support and
facilitation to improve care and maintain this
• Good practice exists and hospice models are spreading
• Promising interventions and tools are in development
• Link with frailty agenda
• Joined-up commissioning is key
1. Deliver integrated timely person-centred care, improving outcomes, including comfort and QoL
2. Develop new knowledge on palliative care need including people with mild and moderate dementia, young onset and rapidly progressive, and robust data on care transitions, need and service provision now and for the
future
3. Leverage sustained improvement in care, working with, public, commissioners and policy makers, creating a network for care, engagement and research capacity
PP
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----------------Network for Excellence in Palliative Dementia Care-------------------
WS 6
Integrated care model
WS 1
Policy &
guideline reviews
WS 2
Routine dataWS 3
Cohort studies
WS 4 Synthesis
WS 5 Co-design
EMBED-
Care
Thank you
http://www.ucl.ac.uk/mcpcrd/research/dementia
@drlizsampson
@MCPCRD