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What works in dementia care?
Good endings: what do we know about end of life care for older people with
dementia?
Karen HarrisonKaren HarrisonConsultant Admiral NurseConsultant Admiral Nurse
8 April 2008
Aims of this session
Understand what is meant by palliative care
Understand the drivers for palliative care in dementia
Understand the national policy drivers
Explore some of the issues for people with dementia and their carers
Gain an overview of the NCPC project
Round table discussion on own experiences
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600000
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1000000
1200000
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1800000
2000000
2011 2021 2031 2041 2051
100 & over
95-99
90-94
85-89
80-84
75-79
70-74
65-69
Numbers of people with late onset dementia by age group
Dementia UK 2007 Results
Co Morbidity issues
Multiple medical problems
Cumulative effect
Poly pharmacy
Acute illnesses
Under assessment and treatment
…..add dementia into the equation
Age Bands 65 to 74 75 to 84 85+
Cancer
Number of deaths 33305 43330 20474
Number with dementia 977 3800 5951
% with dementia 2.90% 8.80% 29.10%
Circulatory
Number of deaths 31548 71469 67962
Number with dementia 941 6319 19992
% with dementia 3.00% 8.80% 29.40%
Respiratory
Number of deaths 9615 21019 18239
Number with dementia 283 1817 5224
% with dementia 2.90% 8.60% 28.60%
Patients with life threatening illness who then develop dementia
Patients who already have dementia who then develop a co morbid illness
People who develop dementia as part of another disease process
People who die from dementia
Dying from and with dementia
National Service Framework – Older People (2001)
Building on the best: End of life initiative (2004)
Everybody’s Business – The OPMH Service Development Guide (2005)
A New Ambition for Old Age: Implementing the NSF for Older People (2006)
National Drivers (1)
NICE/SCIE Dementia: supporting people and their carers in health and social care (2006)
Diagnosis to death Die with dignity and in a place of their choosingAdopt a palliative care approach Same access to palliative care services as those people without dementiaResponsibility of Primary Care Teams Guidance on eating and drinking, the use of antibiotics and CPR.
National Drivers (2)
The National Audit Office Dementia Report (2007)
Opportunity to ‘gear up’ end of life care for people with dementia by working with the third sector.
Only 16% of CMHT’s were regularly providing palliative treatments
Few bed based services able to cater for the needs of those dying with dementia.
National Drivers (3)
Palliative care in dementia – what do we know?
Palliative care should be available on basis of need
Role of mental health services in care of the dying
Iatrogenic suffering
An agreed way forward?
What do we mean by palliative care?
“Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and
spiritual” (WHO, 2002)
Palliative care in dementia – some of the issues
Quality of dying?
NHS Complaints
Certification of death
The trajectory of dementia
Terminal illness?
Semantics?
Palliative care needs of people with dementia
Assessment of pain and other symptoms
Carer of people with dementia
Decisions about end-of-life care
Palliative care needs of people with dementia
Assessment of pain and other symptoms
Confusion (83%)Urinary incontinence (72%)Pain (64%)Low mood (61%)Constipation (59%)Loss of appetite (57%)
Palliative care needs of people with dementia
Carers of people with dementia
Wish List
Diagnosis
Home for life
Equal Access
Research
Robust care arrangements
Palliative care needs of people with dementia
Decisions about end-of-life care
To treat or not to treat
Care pathways?
Advanced decisions and directives
Advanced Care Planning
NCPC’s Dementia Project
PurposeTo promote increased and better quality palliative care for people with dementia
Project ManagerLloyds TSB Foundation
Admiral Nurse secondment From ‘for dementia’
Objectives
Map current servicesHighlight gapsUnderstand user and carer needsIdentify and share notable practiceDevelop practical guidance
Mapping services and highlighting gaps
Organisation of palliative care for people with dementia is characterised by fragmentation
Access to palliative care services is variable
Evidence of inappropriate admission to acute hospitals
Understanding user and carer needs
Our approach
Five essential areas
Physical needs not met
Identifying notable practice
Examples from different care settings
Developing work
Developing guidance
Three NCPC dementia publications
Exploring Palliative CareProgress with DementiaCreative Partnerships
Role of the Admiral Nurse
Working partnership with project manager
Clinical knowledge of dementia
Practice development
Work towards developing palliative care for people with dementia in a geographical area
Round table discussions
How are we addressing the palliative and end-of-life care of people with dementia locally?
What learning will we take back to our local setting from today?
How will we move forward to improve palliative care services locally for people with dementia?
2 key action points
