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Dementia and Palliative Care. Care at the end of life for patients with dementia Regina Mc Quillan, Palliative Medicine Consultant. Dementia in Ireland. 38,000 people with dementia in Ireland 75% living at home, many without formal diagnosis 50% of care provided by family
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Dementia andPalliative Care Care at the end of life for patients with dementia Regina Mc Quillan, Palliative Medicine Consultant
Dementia in Ireland • 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 • 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
Information • What is happening? • What is the diagnosis? • What are the likely changes in next months, years?
Appropriate equipment • Access to OT and physiotherapy assessment
Practical help • Home-help • Carer at home
Specialist help • Dementia specialist • Psychiatry of Old Age • Care of the Elderly • Specialist Palliative Care
End of life-Last year of life • 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 • Multiple comorbidities • Karnofsky Performance Status <50 • General physical decline • Weight loss >10% • Albumin <25g/l
GSF Dementia-primary indicators • Assistance to walk • Double incontinence • No verbal communication • Cannot dress unaided • Barthel<3
GSF Dementia-secondary indicators • Pyleonephritis/UTI • Pressure sores grade III/IV • Recurrent fevers • Reduced oral intake • Aspiration pneumonia
Advance Care Planning • 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) • CPR • Comfort measures only • Limited additional measures eg oral antibiotics, iv antibiotics, parenteral fluids • Full treatment including ICU etc
Beaumont Pilot Project • Based on POLST • No proxy decision maker role in Ireland • Anticipatory prescribing for potential symptoms
Symptom management • 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 • 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
Artificial feeding • No evidence of benefit of quality or quantity of life
End of life care in dementia • 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