End of Life care and dementia

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End of Life care and dementia

• Jane Buswell Nurse Consultant

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A good Death

• Being treated as an individual, with dignity and
  respect
• Being without person and other symptoms
• Being in familiar surroundings
• Being in the company of close family and friends
• The End of Life care Strategy (DoH 2008)

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Professional challenges

• Unwilling to discuss death and dying
• Communicating insensitively
• Not working with relatives to enable them to be
  involved at the end of persons life
• Difficulty with decisions about persons care
• Current services more used to dealing with sharp
  decline rather than uncertain course of dementia

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Dementia and End of Life

• 800,000 people in the UK have dementia
• One in three people over the age of 65 will end
  their lives with a form of dementia
• Dementia is the third most common underlying
  cause of death for women in England behind heart
  disease and stroke
• Historically doctors have not routinely recoded
  dementia on death certificates

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Dying and dementia

• People may die from complications arising from
  end stage dementia
• People may being the early stages of dementia and
  die from another illness
• People may die from a mix of problems. Dementia
  may not be the main cause of death , but it
  interacts with other conditions and can
  complicated

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Location number of deaths
Care Home 15,756 63
Hospital 7,522 30
Hospices 44 Less than 1
Own home 1,439 6
Other 288 Less than 1
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7 key issues

• Public awareness
• Care planning and proxy decision making
• Dignity
• Pain
• Withholding and withdrawing treatment
• Emotional and spiritual concerns
• Place of care and death

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Gold Standard framework

• Provides health and social care professionals
  with a structure to identify those in their last
  years of their life, assess their needs symptoms
  and preferences and plan care to meet these
• Enables the person to live and die where they
  choose

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Gold standard framework helps the care team
provide

• Right care at right time for right person
• Care that is person and carer centred
• Care that plans ahead rather than reacts in an
  emergency
• Care that is closer to where the person with
  dementia wants to be cared for avoids unnecessary
  hospital admission
• Partnership working

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Liverpool Care Pathway

• Focuses on last days and hours of life
• Comfort measures and symptom control
• Psychological support
• Religious and spiritual support
• Communication with the person and their family
• Communication with healthcare professionals

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Managing symptoms

• Pain
• Constipation
• Eating problems and lack of appetite
• Agitation
• Low mood
• Pressure ulcers

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Additional complications

• No diagnosis- no advance care planning!
• Diminishing mental capacity
• Difficulty with communication
• Uncertainty in prognosis

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Resources

• Community teams
• Weston Hospice Team
• Alzheimers Society
• National Council for Palliative Care
• NHS End of Life Care Programme

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Unified Do Not Attempt CPR forms

• For use in all care settings across Bristol,
  North Somerset and South Glos
• Us only an original form with red border from the
  pad

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Peter, living with dementia says

• Death and dying should be a natural matter to
  discussPalliative care for me starts, should
  start, the minute you get ad diagnosis
• The process of dying is quite a natural process.
• (My life until the end-Dying well with
  dementia
• Alzheimer's Society October 2012)

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Key messages

• Living well with dementia also includes
  supporting a person with dementia to die well, or
  as they would have wished
• Requires good person-centred care
• Support family and help them understand what is
  happening