Palliative Care in Dementia

1. Palliative Care in Dementia Mike Walker June 2012

2. Palliative Care in Dementia3 Topics • Dementia is a terminal condition with no prospect of recovery before death • Pain symptoms • Agitation

3. Dementia is a terminal condition • Quality of life can be improved • It always ends in death • By tradition we have not treated it in a palliative way – we have tended to treat behaviour and search for cure • Time of death very hard to predict (even more than in physical conditions!). But this can prevent palliative approach. • Systems often require a “terminal” diagnosis (esp cancer)

4. Carer’s issues • “bereavement before death” • But stress of being carer at the same time • Carers for people with mental health problems (inc depression and dementia) more stressed than other carers (on average)

5. PEG Tubes • Median survival 1 month • 1 year survival 10%

6. Pain • Potential cause of behavioural symptoms

8. Husebo et al. BMJ 2011 • Nursing home residents with dementia and agitation (not known pain) • Stepwise pain relief, paracetamol -> morphine -> buprenorphine patch -> pregabalin • Vs placebo • Significant benefit on agitation and behaviour scores

9. Mental Capacity • MCA 2005 • Always specific to individual question • But likely to be lacking in severe dementia • Professionals must act in “Best Interests” – this is deliberately undefined

10. Advanced Decision (to refuse treatment) • Under MCA 2005 • If this is life-sustaining treatment decision must be in writing, signed and witnessed and specify that life may be at risk

11. Memantine • Dr W: “I find it has very few side effects” • Carer: “and how would you know?”

12. Double Effect • We accept that control of pain in terminal illness may be associated with severe life-threatening side effects • Symptoms of dementia are often behavioural • Compare the furore over 4% per annum increased mortality with anti-psychotics in dementia • Whose best interests?

13. Agitation in terminal illness • Risperidone • Haloperidol • Both the above have a high quality RCT evidence base for behaviour in dementia • Both potent • 4% per annum increased mortality – relevant? • Still start with lowest doses!

14. Agitation in the last days and hours of life - NCPC guidelines • Look for treatable cause • Midazolam • Levomepromazine • Haloperidol if psychotic symptoms

15. Co-ordination of care • Patient often known to my team with advanced dementia • OOH services and A+E don’t know patient • Confusion assumed to be acute unless otherwise proven • Falls + other minor issues lead to admission • Sometimes the only way of accessing social care – but burden on health

16. General hospital admission 3 questions in Stewarts: • Resus? • General Hospital Transfer? • Any treatment at all? • Recommended answer – no no yes • With proviso to reduce pain and maintain dignity may need high-tech – eg #NOF

17. The real world • Many services find it hard to do nothing without very explicit direction often from doctor. Including: • Ambulance • Care Homes • Psychiatric wards