Palliative care and dementia

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Palliative care and dementia

• Sarah partington

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Background.

• Palliative care emphasises quality of life. It
  should not be a philosophy of no hope.
• There is a lack of recognition of advanced
  dementia as a life limiting, incurable disease.
• Currently no standardised pathway for end stage
  dementia.
• Lack of research into palliation and dementia.
• Little or no guidance on when a person is
  reaching end stages of dementia.

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Whats the difference in dementia?

• Prolonged and varied illness trajectory.
• Traditional palliative care associated with
  malignant disease.
• Lack of understanding , skills, and knowledge
  among health providers.
• Lack of research.
• Hancock. K. et al (2006)

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WHY DOES IT MATTER?

• Advanced planning not crisis management.
• Prevent inappropriate hospital admissions.
• Open honest discussions with MDT and family
  members.
• Advanced symptom management planning, appropriate
  to that individual and taking into account their
  uniqueness.
• Ensure staff have the knowledge and skills
  required to deliver high quality effective care.
  Improved team working MDT.
• Ensure comfort, dignity and reduce distress at
  end of life.

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Aims of the research study

• To evaluate and implement an end of life
  assessment tool for people with dementia.
• To develop a local tool that will identify end
  stage dementia.
• To educate and support staff and relatives in
  dementia advanced care planning.
• To develop resources and pathways to guide care.

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Methodology

• Two methods of data collection -Questionnaire
  observation
• Two specialist dementia care homes (110 beds and
  80 beds), 10 residents.
• Formal training, resource file, ongoing support
  and education.
• Analysed using descriptive statistics and actions
  identified.

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Conclusions recommendations

• Tool found to be useful in practice, alterations
  made.
• Training and support probably most important
  element.
• Common misconception that palliative either
  cancer or sent home on poor prognosis package.
• Still a believe palliative care means nursed in
  bed.
• Having experienced care co-ordinator.
• Having resource file which included information
  to give to family.
• 1 out of 10 hospitalisation, so not completely
  prevented and may be appropriate.
• Increased carer satisfaction and confidence.

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1ST we have to identify the patients
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The surprise question

• would you be surprised if this person was to
  die in the next 6- 12 months?
• Think of a person you know or have known..

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Patients with dementia must show all of the
below characteristics. (tick all that apply)
Unable to ambulate without assistance.
Unable to dress without assistance.
Unable to bathe without assistance.
Urinary and feacal incontinence, intermittent or constant.
No meaningful verbal communication stereotypical phases only or the ability to speak is limited to six or fewer intelligible words.
Difficulty swallowing or eating.
Patients must have had one of the following
within the past 12 months. (tick all that apply)
Aspiration pneumonia.
Kidney infection or other upper urinary tract infection.
Septicemia.
Pressure ulcers, multiple, stage 3-4.
Fever, recurrent after antibiotics.
Inability to maintain sufficient fluid and calorie intake with 10 weight loss in previous 6 mnths
NB. This tool is designed to guide care pathways
and is not a diagnostic instrument.
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Thinking Ahead Advanced Care Planning
Discussion. This is not a legal document, but a
guide to care and can alter at any time following
discussion of any changes. The aim of any
discussion about thinking ahead (sometimes called
advanced care planning) is to develop a better
understanding and recording of individual
priorities, needs and preferences and those of
their families/ carers. This should support
planning and provision of care, and enable better
planning ahead to best meet these needs. This
philosophy of hoping for the best, but preparing
for the worst enables a more proactive approach,
and ensure that it is more likely that the right
thing happens at the right time. It also reduces
the need for difficult and emotive decisions to
be made at a time of crisis. At any time this
plan can change, this is a dynamic planning
document to be adapted and reviewed as needed.
PATIENT NAME ADDRESS DOB NHS NO DATE COMPLETED GP HOSPITAL CONTACT
Family members involved in Advanced Planning Discussions Name Contact No Family members involved in Advanced Planning Discussions Name Contact No
Name of healthcare professional involved in Advanced Planning Discussions Role/ name Contact No Name of healthcare professional involved in Advanced Planning Discussions Role/ name Contact No
Name of healthcare professional involved in Advanced Planning Discussions Role/ name Contact No Name of healthcare professional involved in Advanced Planning Discussions Role/ name Contact No
Name of healthcare professional involved in Advanced Planning Discussions Role/ name Contact No Name of healthcare professional involved in Advanced Planning Discussions Role/ name Contact No
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Background Information.

Thinking ahead, planning for anticipated problems
Hospitalisation. Subcutaneous fluids.
3. Diet and Fluids. 4. Alternatives to oral medication.
PREFERRED PLACE OF CARE
Advanced care planning handover form completed ? YES / NO
Signatures of those present ...
COPIES TO ALL PRESENT AND GP, ONE COPY TO BE HELD
IN PATIENTS RECORDS.
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End Stage Dementia Resource File

• Care pathway
• End stage dementia assessment tool
• Advanced care planning handover form
• Contact numbers
• Thinking ahead- advanced care planning discussion
  form
• Steps to discussion making in feeding problems
  guide
• Liverpool care pathway document
• Abbey pain scale
• Prescription charts
• Useful research and leaflets for relatives.

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FUTURE RECOMMENDATIONS/ RESEARCH

• Implementation of tool, education and support
  package across B A.
• Specialists to support care homes.
• Integration with acute trust and hospice.
• Further research into symptom control in end
  stage dementia required.

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Remember

• Palliative care means living well until the point
  of death.
• Dont be afraid to talk about death and dying.
• Continued nutrition and hydration are not always
  appropriate and may not offer comfort, but
  prolong suffering and death.
• Antibiotics may be appropriate if they provide
  symptom relief.
• Stop inappropriate interventions and medications.
• YOU know your clients, ensure their symptoms are
  managed and use appropriate tools to help.
• People can and do improve! So need to reassess on
  regular basis and alter plans to meet need.

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References

• Hughes. J. C. (2006) Palliative care in severe
  dementia. MA Healthcare Ltd.
• Hancock. K. et al (2006) Palliative care for
  people with advanced dementia. Alzheimers care
  quarterly. 7. 1. pp49-57.
• Henderson. J. 2009 Beyond Barriers learning
  together. Journal of Dementia Care. Vol 17 No2
  Pp 30-32.
• Aminoff. B. Adunsky. A. 2006 Their last 6 months
  suffering and survival of end stage dementia
  patients. Age and Ageing. Vol 10. Pp 1093.
• The Comptroller and auditor general. 2007.
  Improving services for people with dementia.
  London. National Audit Office.
• Rogers. A. 2003. Alzheimers disease Unravelling
  the mystery. New York. US Department of Health
  and Human Sciences.
• Schonwetter. R. Han. B. Small. B. Martin. B.
  Tope. K. Haley. W. Predictors of six month
  survival among patients with dementia an
  evaluation of hospice Medicare guidelines.
  American Journal of Hospice Palliative Care.
  2003. 20. 105-13.
• National Institute for Clinical Excellence (2006)
  Dementia Supporting people and their carers in
  health and social care. National Clinical
  Practice Guideline Number 42. London, NICE
• Alzheimers Society (2007) Dementia UK. London,
  AS

Cormack, DFS. 1991. The research process in
nursing (2nd ed) Oxford. Blackwell Scientific
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