Palliative Care in Dementia Mike Walker June 2012

Palliative Care in Dementia 3 Topics Dementia is a terminal condition with no prospect of recovery before death Pain symptoms Agitation

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)

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)

PEG Tubes Median survival 1 month 1 year survival 10%

Pain Potential cause of behavioural symptoms

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

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

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

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

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?

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!

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

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

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

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