Palliative care for people with dementia

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