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

1
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 Lead
• Hertfordshire Partnership NHS Foundation Trust
  (HPFT)
• Wendy Ward
• Strategic Liaison Dementia Nurse for
  Hertfordshire Hertfordshire
  Partnership NHS Foundation Trust

2
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
NDS Objective 12
Living Well with Dementia in Care Homes
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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 Care

• Palliative 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

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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 2006
• Definition End of Life Care
• Care that helps all those with advance,
  progressive, incurable illness to live as well as
  possible until death.
• NCPC 2009

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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?

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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

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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

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• 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 Health
• Department 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. London
• National 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.uk
• Office of the Public Guardian. http//www.publicgu
  ardian.gov.uk/

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• Contact details
• Beke Tshuma beke.tshuma_at_hertpartsft.nhs.uk
  07768557524
• Wendy Ward wendy.ward_at_hertspartsft.nhs.uk 0790065
  2700