2Palliative Care in Dementia 3 Topics Dementia is a terminal condition with no prospect of recovery before deathPain symptomsAgitation
3Dementia is a terminal condition Quality of life can be improvedIt always ends in deathBy tradition we have not treated it in a palliative way – we have tended to treat behaviour and search for cureTime 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)
4Carer’s issues “bereavement before death” But stress of being carer at the same timeCarers for people with mental health problems (inc depression and dementia) more stressed than other carers (on average)
5PEG TubesMedian survival 1 month1 year survival 10%
8Husebo et al. BMJ 2011Nursing home residents with dementia and agitation (not known pain)Stepwise pain relief, paracetamol -> morphine -> buprenorphine patch -> pregabalinVs placeboSignificant benefit on agitation and behaviour scores
9Mental Capacity MCA 2005 Always specific to individual question But likely to be lacking in severe dementiaProfessionals must act in “Best Interests” – this is deliberately undefined
10Advanced Decision (to refuse treatment) Under MCA 2005If this is life-sustaining treatment decision must be in writing, signed and witnessed and specify that life may be at risk
11Memantine Dr W: “I find it has very few side effects” Carer: “and how would you know?”
12Double EffectWe accept that control of pain in terminal illness may be associated with severe life-threatening side effectsSymptoms of dementia are often behaviouralCompare the furore over 4% per annum increased mortality with anti-psychotics in dementiaWhose best interests?
13Agitation in terminal illness RisperidoneHaloperidolBoth the above have a high quality RCT evidence base for behaviour in dementiaBoth potent4% per annum increased mortality – relevant?Still start with lowest doses!
14Agitation in the last days and hours of life - NCPC guidelines Look for treatable causeMidazolamLevomepromazineHaloperidol if psychotic symptoms
15Co-ordination of carePatient often known to my team with advanced dementiaOOH services and A+E don’t know patientConfusion assumed to be acute unless otherwise provenFalls + other minor issues lead to admissionSometimes the only way of accessing social care – but burden on health
16General hospital admission 3 questions in Stewarts:Resus?General Hospital Transfer?Any treatment at all?Recommended answer – no no yesWith proviso to reduce pain and maintain dignity may need high-tech – eg #NOF
17The real worldMany services find it hard to do nothing without very explicit direction often from doctor. Including:AmbulanceCare HomesPsychiatric wards