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