1. Palliative Care in Dementia
Mike Walker
June 2012

2. Palliative Care in Dementia 3 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