1. Palliative care for people with dementia Andy Clegg Clinical Senior Lecturer & Consultant Geriatrician University of Leeds & BTHFT

2. Outline Epidemiology & subtypes Diagnosis & symptoms Palliative care for people with dementia Approach to the agitated patient with dementia Approach to the patient with dementia and feeding problems Service development

3. Epidemiology 700,000 people in the UK with dementia Prevalence expected to double over next 30 years An estimated 24 million people worldwide have dementia Dementia costs the UK economy £17billion per annum Costs projected to treble to £50 billion over next 30 years

4. National policy Better care for people with dementia and their carers is a central component of the NHS operating framework Better identification of dementia is currently a national CQUIN goal Better palliative care for people with dementia is part of national dementia strategy NICE quality standard to improve palliative care for people with dementia

5. Definition of dementia Dementia is a syndrome characterised by a global decline in cognitive function Memory problems Abnormal speech Executive function impairment (planning, judgment, abstract thinking, problem solving) Agnosia (impaired recognition of people or objects) Apraxia (impaired performance of learned motor skills

6. Symptoms Progressive decline in multiple areas of function Memory Reasoning Communications skills Skills needed to carry out activities of daily living

7. BPSD Individuals may also develop behavioural and psychological symptoms of dementia (BPSD) Depression Psychosis Agitation Wandering Can occur at any time of the illness and can be particularly intrusive

8. Impact of dementia Devastating impact on individuals and family carers Many carers are themselves frail older people Dementia can affect all, irrespective of social class, gender, ethnicity A terminal illness, although people with dementia usually live for 7-12 years after diagnosis

9. Main types of dementia Alzheimer’s dementia Vascular dementia Frontotemporal dementia Lewy body dementia

10. Alzheimer’s dementia Diagnosed by presence of Memory deficit and evidence of at least one other cognitive deficit Together, these must result in impairment in performance of daily activities Characterised by gradual onset and continuing cognitive decline

11. Vascular dementia Diagnosed by presence of Memory deficit and evidence of at least one other cognitive deficit Impairment in performance of daily activities not due to the physical effects of stroke alone Clinical and radiological evidence of cerebrovascular disease Temporal relationship, abrupt onset, fluctuating, stepwise progression Supporting clinical features include early gait disturbance, falls, urinary symptoms, pseudobulbar palsy, personality/mood changes

12. Frontotemporal dementia Diagnosed by presence of Insidious onset & gradual progression Early decline in social/interpersonal conduct Early impairment in regulation of personal conduct Early emotional blunting Early loss of insight Supportive features include decline in personal hygiene, mental rigidity, altered speech, incontinence, rigidity, tremor

13. Dementia with Lewy bodies Diagnosed by the presence of Progressive cognitive decline that interferes with social or occupational function Prominent or persistent memory impairment may not necessarily occur in the early stages Inattention and visuospatial impairment may be especially prominent Fluctuating cognition with pronounced variations in attention and alertness Recurrent visual hallucinations Spontaneous motor features of Parkinsonism

14. Problems with diagnosis Criteria may be interpreted differently by different clinicians and researchers Indistinct boundaries In the ageing brain, pathologies associated with frank dementia are often seen in people who die without dementia

15. Any questions

16. Dementia – a terminal illness Dementia is a leading cause of death but is underrecognised as a terminal illness Evidence that patients with advanced dementia receive suboptimal palliative care Lack of knowledge about the final stage of dementia may impede the quality of care provided Improved end of life care for people with dementia is part of UK national strategy

17. Research evidence 2010 NEJM prospective cohort study of 323 nursing home residents with advanced dementia Followed up for 18 months Data on survival, clinical complications, symptoms and treatments

18. Outcomes Over an 18 month period, 55% died 41% developed pneumonia (6 month mortality 47%) 53% developed a febrile episode (6 month mortality 45%) 86% developed an eating problem (6 month mortality 39%) Distressing symptoms included Dyspnoea (46%) Pain (39%)

19. Outcomes In the last 3 months of life 41% underwent at least one burdensome intervention Hospitalisation, ED visit, parenteral therapy, tube feeding Those whose proxies had an understanding of the poor prognosis and expected clinical complications much less likely to have a burdensome intervention

23. Any questions

24. Approach to the agitated patient with dementia

25. BPSD Antipsychotics have traditionally been used as first line therapy for people with dementia 40-60% of people with dementia in nursing homes prescribed antipsychotics Estimated that 180,000 people with dementia prescribed an antipsychotic Estimated 1620 excess strokes and 1800 excess deaths per annum

26. Delirium and dementia People with dementia are at increased risk of developing delirium Rapid onset of fluctuating confusion and inattention Common causes are infection, medications, pain, dehydration/electrolyte imbalance If unsure whether delirium or dementia, assume delirium and investigate/treat accordingly

27. Pain and dementia Many people with dementia have painful conditions (arthritis, vertebral fractures) People with dementia underreport pain Pain can be an underrecognised cause of agitation in people with dementia If you think a patient with dementia is in pain but you don’t know why think constipation

28. Trial evidence Cluster RCT of systematic analgesia for people with dementia Stepwise protocol for pain relief (paracetamol- morphine-buprenorphine-pregabalin) Control group received usual care Clinically meaningful (17%) and statistically significant reduction in agitation in intervention group

29. Approach to the agitated patient with dementia Does this patient have delirium? Is this patient in pain? Is this patient constipated? Then… Think Think again Think again… » Ask a psychiatrist Consider antipsychotic

30. Approach to the patient with advanced dementia and feeding problems

31. Trial evidence No evidence that tube feeding for people with advanced dementia reduces risk of aspiration No evidence that tube feeding for people with advanced dementia reduces mortality Periprocedural complications are common Prolonged survival of underweight people with dementia is common A hand feeding strategy is arguably the best plan

32. Practical challenges An understandably emotive discussion about a life-sustaining treatment Tube feeding has face validity for improving outcomes

33. A practical approach A careful, balanced, detailed discussion with family members can often lead to a conservative approach A second opinion can be helpful if there is disagreement Involvement of a nutrition team can be beneficial

34. Service development

35. Developing a palliative care service for people with dementia Dementia is a terminal illness Better palliative care for people with dementia is a national priority Distressing symptoms are common in advanced dementia Burdensome treatments are common in advanced dementia Pneumonia, febrile illnesses and feeding problems are common indicators of end-of-life stage

36. Developing a palliative care service for people with advanced dementia Support advanced planning for people with dementia Better care for people with advanced dementia who are in the terminal phase of life Identification of those who are in the terminal phase of their illness and likely to need specialist palliative care input Pneumonia Febrile illness Feeding problems Management of terminal symptoms, including pain, agitation and breathlessness

37. Benefits Better care for people with advanced dementia in the terminal phase of life Improved support for family members and carers Fewer emergency admissions to hospital Fewer readmissions to hospital Fewer burdensome procedures

38. Any questions

39. Clinical dilemma 86 year old lady with advanced dementia, dysphagia, weight loss and vomiting

40. References 1.Living well with dementia: a national dementia strategy. DH 2009. 2.Mitchell SL, Teno JM, Kiely DK. The clinical course of advanced dementia. NEJM 2009; 361(16): 1529-1538 3.Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of the evidence. JAMA 1999; 282(14): 1365-1370 4.End of life care for people with dementia. Commissioning guide. NICE 2010