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 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

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 Bands65 to 7475 to Cancer Number of deaths Number with dementia % with dementia2.90%8.80% 29.10% Circulatory Number of deaths Number with dementia % with dementia3.00%8.80% 29.40% Respiratory Number of deaths Number with dementia % with dementia2.90%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 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. 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 Purpose To promote increased and better quality palliative care for people with dementia Project Manager Lloyds TSB Foundation Admiral Nurse secondment From ‘for dementia’

Objectives Map current services Highlight gaps Understand user and carer needs Identify and share notable practice Develop 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 Care Progress with Dementia Creative 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

Thank you