Dementia and
Palliative Care
Care at the end of life for patients
with dementia
Regina Mc Quillan, Palliative Medicine Consultant
Dementia in Ireland
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38,000 people with dementia in Ireland
75% living at home, many without formal
diagnosis
50% of care provided by family
Alzheimer’s Society of Ireland; National Economic and Social Forum
Dementia
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A progressive fatal illness
Live with illness for years, not months
Patients live with it
Family live with it
Carers live with it
Adaptation to changes by patient, family and
carer
Adaptation to changes
Information
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What is happening?
What is the diagnosis?
What are the likely changes in next months,
years?
Appropriate equipment
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Access to OT and physiotherapy assessment
Practical help
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Home-help
Carer at home
Specialist help
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Dementia specialist
Psychiatry of Old Age
Care of the Elderly
Specialist Palliative Care
End of life-Last year of life
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Difficulty prognosticating
General decline over months/years
Acute episodes with recovery, but maybe not
to premorbid level
Gold Standard Framework
Prognostic Indicators for
Dementia
www.goldstandardsframework.nhs.uk
GSF Dementia-general principles
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Multiple comorbidities
Karnofsky Performance Status <50
General physical decline
Weight loss >10%
Albumin <25g/l
GSF Dementia-primary indicators
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Assistance to walk
Double incontinence
No verbal communication
Cannot dress unaided
Barthel<3
GSF Dementia-secondary indicators
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Pyleonephritis/UTI
Pressure sores grade III/IV
Recurrent fevers
Reduced oral intake
Aspiration pneumonia
What to do?
Advance Care Planning
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What does the patient want?
What does the family believe the patient
would want? (not just what the family wants)
What to health care professionals believe is
clinically appropriate?
Advance Care Planning
A discussion, a process
Not a tick box exercise
Often not considered in dementia when patient
still competent
Not legally binding
Needs review as patient condition changes,
including if patient stabilizes
Requires patient/family education re nature of
dementia
Physician Orders for Life
Sustaining Treatment (POLST)
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CPR
Comfort measures only
Limited additional measures eg oral
antibiotics, iv antibiotics, parenteral fluids
Full treatment including ICU etc
Beaumont Pilot Project
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Based on POLST
No proxy decision maker role in Ireland
Anticipatory prescribing for potential
symptoms
Specific Problems
Symptom management
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Assessment- patient report, patient history,
patient observation including behaviour
changes, assessment tools-4 point verbal
rating scale
Treatment-may be best guess, if assessment
not clear
Evaluation of intervention-as part of
assessment, and to see value of treatment
Symptom assessment tools
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Four point verbal rating scale is the best
Abbey Pain Scale
www.cityofhope.com
Feeding
Anorexia
 Dysphagia
 Weight loss
Part of the natural history of dementia
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Artificial feeding
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No evidence of benefit of quality or quantity
of life
End of life care in dementia
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A progressive illness
Family role as ‘voice’ for patient
Family/patient education
Staff education
Staff networking-OT, physio, psychiatry,
specialist palliative care, spiritual care
Avoid the ‘bank holiday Friday’ crises