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

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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