1. Dementia and Palliative Care Care at the end of life for patients with dementia Regina Mc Quillan, Palliative Medicine Consultant

2. 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

3. 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

4. Adaptation to changes

5. Information What is happening? What is the diagnosis? What are the likely changes in next months, years?

6. Appropriate equipment Access to OT and physiotherapy assessment

7. Practical help Home-help Carer at home

8. Specialist help Dementia specialist Psychiatry of Old Age Care of the Elderly Specialist Palliative Care

9. End of life-Last year of life Difficulty prognosticating General decline over months/years Acute episodes with recovery, but maybe not to premorbid level

10. Gold Standard Framework Prognostic Indicators for Dementia www.goldstandardsframework.nhs.uk

11. GSF Dementia-general principles Multiple comorbidities Karnofsky Performance Status <50 General physical decline Weight loss >10% Albumin <25g/l

12. GSF Dementia-primary indicators Assistance to walk Double incontinence No verbal communication Cannot dress unaided Barthel<3

13. GSF Dementia-secondary indicators Pyleonephritis/UTI Pressure sores grade III/IV Recurrent fevers Reduced oral intake Aspiration pneumonia

14. What to do?

15. 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?

16. 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

17. 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

18. Beaumont Pilot Project Based on POLST No proxy decision maker role in Ireland Anticipatory prescribing for potential symptoms

19. Specific Problems

20. 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

21. Symptom assessment tools Four point verbal rating scale is the best Abbey Pain Scale www.cityofhope.com

22. Feeding Anorexia Dysphagia Weight loss Part of the natural history of dementia

23. Artificial feeding No evidence of benefit of quality or quantity of life

24. 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