Integrating palliative care for patients with dementia
Dementia is an umbrella term, describing a collection of symptoms and signs caused by many different diseases that impair brain function. The most common types are Alzheimer disease, dementia with Lewy bodies (including Parkinson disease dementia), and vascular dementias—see the Psychotropic guidelines for subtypes, features and assessment of dementia.
Although early symptoms of dementia vary, there is an irreversible progression to brain failure (characterised by functional decline), frailty, cachexia and other complications, and eventual death. This highlights the importance of early integration of a needs-focused palliative approach to care alongside disease-orientated management for dementia. Palliative care may involve referral to a specialist palliative care service. Principles of palliative care for patients with dementia summarises principles of palliative care for patients with dementia.
Collaborate with, and define the roles and responsibilities of, clinicians, services, families and carers. Consider whether or when to refer to a specialist palliative care service—see Who provides palliative care?.
Educate the patient and their carer(s) about the prognosis, if appropriate—see Overview of communicating with and supporting patients with palliative care needs.
Discuss the patient’s preferences, values and goals of care initially and continue to review.
Support early advance care planning, including appointment of a substitute decision-maker, and discussion of resuscitation and hospitalisation.
Identify and support emotional and psychosocial needs.
Anticipate and plan for transitions across various settings, and acknowledge patient and family preferences—see Where is palliative care provided?.
Create and maintain an individualised disease management plan to address current health problems and those expected to arise:
- Manage symptoms and complications, including creating a symptom management plan.
- Plan an approach to modify or stop treatments as the illness progresses (see Decisions about withdrawing or withholding treatment in palliative care), particularly drugs.
Support the family and principal carer.
Support patients and their families and carers experiencing loss, grief and bereavement.
Prepare for the last days of life.
NB1: It is often appropriate to introduce palliative care from the time it is recognised that a patient has progressive, life-limiting illness; palliative care can be continued alongside disease-orientated management for dementia.
NB2: Aspects of palliative care may need to be introduced or revisited depending on patient and carer needs, and the clinical context. The approach and priorities of care often change with the phase of the illness.
NB3: Caring for patients with palliative care needs can be personally and professionally demanding—for further information and advice on building resilience and avoiding burnout, see Healthcare professional wellbeing in palliative care.
It is preferrable to introduce palliative care early for patients with dementia before cognition, communication and physical independence declines. This may:
- improve comfort and quality of life
- increase advance care planning
- reduce symptom burden
- reduce risk of complications such as falls and delirium, which can cause or complicate hospitalisation.
For general benefits of introducing palliative care early, and considerations to inform the approach, see Introducing a patient to palliative care.
Dementia is the second most common cause of death in Australia. The median survival from diagnosis is 5 years but prognostication is challenging. Historically, dementia was considered to have a trajectory of slow decline; however, the occurrence of frequent hospitalisations from complications suggests a similar illness trajectory to heart or respiratory failureHashimie, 2020; see Common illness trajectories for people approaching death for illustrations of common disease trajectories.
Indicators of increasing palliative care needs and limited life expectancy in patients with dementia provides indicators of increasing palliative care needs and limited life expectancy in patients with dementia.
multimorbidity, including diabetes mellitus, heart failure, chronic obstructive pulmonary disease, cancer, cardiac arrhythmias and frailty
behavioural and psychological symptoms of dementia (BPSD)
aspiration pneumonia
urinary or faecal incontinence
recent weight loss or low body mass index (BMI)
dehydration
recurrent fever or infection
pressure ulcers
frequent falls
fractured femur
seizures
breathlessness
dysphagia
poor oral intake
sleeping for most of the day
recent need for continuous oxygen supplementation
complete dependence for activities of daily living
speech limited to 6 words or lessHashimie, 2020
hospital admission with an acute illness
NB1: Also consider general factors when deciding if a patient requires palliative care; see Introducing a patient to palliative care.
NB2: The Functional Assessment Staging Test (FAST) is a quick staging scale that can assist in determining prognosis in dementiaReisberg, 1988.
Patients with advanced dementia and their carer(s) often prefer to remain at their usual place of care (eg home, residential aged-care facility) when possible, which may lead to better outcomes particularly in the last days of life. Patients can remain in their usual place of care with the help of specialist palliative care services, as well as phone and online advice from services such as the Dementia Behaviour Management Advisory Service (DBMAS) and Severe Behaviour Response Teams (SBRT)1.