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

Adaptation to changes

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

What to do?

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 processNot a tick box exerciseOften not considered in dementia when patient

still competentNot legally bindingNeeds review as patient condition changes,

including if patient stabilizesRequires 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

Specific Problems

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