palliative care for people with dementia
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Palliative care for people with dementia
Andy CleggClinical Senior Lecturer & Consultant Geriatrician
University of Leeds & BTHFT
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
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
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
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
Symptoms
• Progressive decline in multiple areas of function
• Memory• Reasoning• Communications skills• Skills needed to carry out activities of daily living
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
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
Main types of dementia
• Alzheimer’s dementia• Vascular dementia• Frontotemporal dementia• Lewy body dementia
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
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
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
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
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
Any questions
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
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
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%)
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
Any questions
Approach to the agitated patient with dementia
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
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
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
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
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
Approach to the patient with advanced dementia and feeding problems
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
Practical challenges
• An understandably emotive discussion about a life-sustaining treatment
• Tube feeding has face validity for improving outcomes
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
Service development
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
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
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
Any questions
Clinical dilemma
• 86 year old lady with advanced dementia, dysphagia, weight loss and vomiting
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
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