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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 Harrison Consultant Admiral Nurse 8 April 2008. Aims of this session. Understand what is meant by palliative care Understand the drivers for palliative care in dementia

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slide1

What works in dementia care?

Good endings: what do we know about end of life care for older people with dementia?

Karen HarrisonConsultant Admiral Nurse

8 April 2008

slide2

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

slide3

Numbers of people with late onset dementia

by age group

Dementia UK 2007 Results

slide4

Co Morbidity issues

Multiple medical problems

Cumulative effect

Poly pharmacy

Acute illnesses

Under assessment and treatment

…..add dementia into the equation

slide6

Dying from and withdementia

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

slide7

National Drivers (1)

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)

slide8

National Drivers (2)

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 choosing

Adopt a palliative care approach

Same access to palliative care services as those people without dementia

Responsibility of Primary Care Teams

Guidance on eating and drinking, the use of antibiotics and CPR.

slide9

National Drivers (3)

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.

slide10

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?

slide11

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)

slide12

Palliative care in dementia – some of the issues

Quality of dying?

NHS Complaints

Certification of death

The trajectory of dementia

Terminal illness?

Semantics?

slide13

Palliative care needs of people with dementia

Assessment of pain and other symptoms

Carer of people with dementia

Decisions about end-of-life care

slide14

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%)

slide15

Palliative care needs of people with dementia

Carers of people with dementia

Wish List

Diagnosis

Home for life

Equal Access

Research

Robust care arrangements

slide16

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

slide17

NCPC’s Dementia Project

Purpose

To promote increased and better quality palliative care for people with dementia

Project Manager

Lloyds TSB Foundation

Admiral Nurse secondment

From ‘for dementia’

slide18

Objectives

  • Map current services
  • Highlight gaps
  • Understand user and carer needs
  • Identify and share notable practice
  • Develop practical guidance
slide19

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

slide20

Understanding user and carer needs

Our approach

Five essential areas

Physical needs not met

slide21

Identifying notable practice

  • Examples from different care settings
  • Developing work
slide22

Developing guidance

  • Three NCPC dementia
  • publications
    • Exploring Palliative Care
    • Progress with Dementia
    • Creative Partnerships
slide23

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

slide24

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

slide25

Thank you

Karen.harrison@beh-mht.nhs.uk

K.harrison@ncpc.org.uk