hertfordshire partnership nhs foundation trust dementia: palliative and end of life (eol) care is...

Hertfordshire PartnershipNHS Foundation Trust

Dementia: Palliative and End of Life (EoL) Care Is Everyone's Business

Beke Tshuma Palliative and End of Life Care (EoL)for People with

Dementia in Hertfordshire Project LeadHertfordshire Partnership NHS Foundation Trust (HPFT)

Wendy WardStrategic Liaison Dementia Nurse for Hertfordshire

Hertfordshire Partnership NHS Foundation Trust


Dementia: National Influences and drivers of palliative and EoL care.

• 2001 - National Service Framework for Older People • 2003 - Building on the Best: Choice, responsiveness and equity in the

NHS. - Funding for implementation of EoL Care initiatives.

• 2004 - End of life Care Programme - NICE Clinical Guidance on ‘Improving Supportive and Palliative Care’

• 2006 - NICE Clinical Guidance 42 “ Dementia: Supporting people with dementia and their Carers in health and social care”.

• 2008 - Darzi report ‘Next stage review’ - National End of Life Care Strategy - East of England ‘Towards the Best Together’ - Delivering Quality Healthcare for Hertfordshire.

• 2009 - Living Well with Dementia: A National Dementia Strategy• 2006 – Date - National Council for Palliative Care: The dementia Project

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National and Local Initiatives:

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National Council for Palliative Care Link into Department of Health (DoH)

NDS Objective 12

NDS Quality of Care Group

NDS Obj.:11

“Living Well with Dementia in Care Homes”


Objective 11: “Living Well with Dementia in Care Homes”

• Improving quality of care for people with dementia • Develop explicit leadership for people with dementia • In reach from mental health community services • Defining care pathways – integrating palliative and end of life

care through the care pathway from diagnosis – death.• Defining outcome measurements – quantitative but also

qualitative

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Palliative CarePalliative Care • “..the active holistic care of service users with advanced

illness. • Managing pain and other symptoms and provision of

psychological, social and spiritual support is paramount. • The goal...achievement of best quality of life and for

service users and their families/carers, to die with dignity and in a place of their choice.” NICE 2006


Palliative and End of Life Care Dementia care should:• Incorporate palliative care from the time of diagnosis till death • Support the quality of life• Enable people to live and die with dignity in a place of their choice• Support the carers with their anticipatory grief and at bereavement

Nice 2006Definition: End of Life Care • Care that helps all those with advance, progressive, incurable illness

to live as well as possible until death. NCPC 2009


Take a moment to think about• What makes you who you are?• What experiences in life have you had?• How do these experiences effect what you say

and do?• What do you like? • What do you dislike?• What are you routines?


Recovery in Dementia

• R Read about dementia• E Encourage strengths• C Communicate from the heart• O Observe non verbal cues• V Value the person beyond diagnosis• E Emotional wellbeing• R Review what works and repeat• Y Yes the patient is always right


Distressed behaviour NOT Challenging behaviour • Verbal insult• Shouting• Physical aggression• Hitting• Biting• Spiting• Throwing objects• Scratching• Wanting to go to work• Waiting for the bus• Looking for parents

• Restlessness • Pacing• Excessive fidgeting• Hand wringing• Following people around• Abnormal vocalization• Apathy• Seeing things that are not there• Hearing things that are not there• Beliefs that are untrue and

cannot be reasoned out from


Case Studies

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References: Department of Health (2001). The National Service Framework for Older People. London: Department of

Health.Department of Health (2001). Building on the best, choice, responsiveness, and equity in the NHS.

London : Department of Health.Department of Health (2005). Mental Capacity Act. London: Department of HealthDepartment of Health, (2008) End of Life Care Strategy. London: Department of Health

Department of Health (2006). Our Health, Our Care, Our Say: A New Direction for Community Services. London: Department of Health.

Department of Health, (2009) Living Well with Dementia: The National Dementia Strategy. London: Department of Health

Hertfordshire Partnership NHS Foundation Trust http://www.hertspartsft.nhs.uk/about-us/

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References:National Council for Palliative Care (2006). Exploring Palliative Care for People with

Dementia. London National Council for Palliative Care (2007). Progress with Dementia: Moving Forward

Addressing Palliative Care for People with Dementia. LondonNational Council for Palliative Care (2008). Creative Partnerships: Improving Quality of

Life at the End of Life for People with Dementia. London.National Council for Palliative Care (2009). Out of the Shadows: End of life care for

people with dementia. London.National End of Life Care Programme (2004).

http://www.endoflifecareforadults.nhs.uk/ National Institute for Health and Clinical Excellence (2006). Dementia: Supporting

people with dementia and their carers. London: www.nice.org.ukOffice of the Public Guardian. http://www.publicguardian.gov.uk/

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Contact details: Beke Tshuma [email protected] 07768557524

Wendy Ward [email protected] 07900652700

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