None listed
Conditions
Brief summary
Dementia is a leading cause of death in developed nations. Despite an often distressing and symptom laden end of life, there are systematic barriers to accessing palliative care in people dying of dementia. Evidence exists that 70% of people living with severe dementia attend an emergency department (ED) in their last year of life. This randomised controlled trial (RCT) will test a Carer End of Life Planning Intervention (CELPI) co-designed by clinicians, content specialists and consumers to improve access to end of life care for older people with severe dementia, using an ED visit as a catalyst for recognising unmet needs and specialist palliative care referral where indicated.
Interventions
The intervention is a Carer End of Life Planning Intervention (CELPI) triad comprised of carer education, end of life planning and specialist palliative care referral. A carer needs assessment (CANDID) was designed for the trial, will be conducted by a non-physician member of the research team and provides a holistic needs assessment which will direct the CELPI components. CANDID captures information on the current and future needs of both the carer and the person with dementia, as well as clari
The intervention is a Carer End of Life Planning Intervention (CELPI) triad comprised of carer education, end of life planning and specialist palliative care referral. A carer needs assessment (CANDID) was designed for the trial, will be conducted by a non-physician member of the research team and provides a holistic needs assessment which will direct the CELPI components. CANDID captures information on the current and future needs of both the carer and the person with dementia, as well as clarifying what, if any, advance care planning has been done to date. The CANDID assessment is conducted through a face to face interview over 1-2 hours, following which a bespoke CELPI for that carer will be developed and documented incorporating a summary of needs and a plan to address these using available resources. This includes current needs; likely future complications; and if necessary, training the carer in the use of symptom scales that can be used to guide carer-initiated treatments for distressing symptoms. A management plan for changed behaviours is incorporated into the intervention. The specialist palliative care referral component during follow up will address key details of; i) what a palliative care referral would entail ii) what a palliative approach and advance care planning looks like for a person dying with dementia. The assessment will be used to develop and implement tailored follow up actions by an agreed referral plan to address these needs mapped to existing available services and will offer access to these services (delivered via community or hospital) to align care with patient wishes for how they would want their end of life to be. CANDID will capture any prior advance health directive or care plan made by the person with dementia when they had capacity, as well as any prior goals of care discussions already held with the carer. The intervention will be delivered in the participants home by the Intervention Clinician, a non-physician member of the research team, and there will be follow up with a phone call by the clinician 4 weeks post CELPI delivery to confirm the currency and completeness of the plan.
Sponsors
The University of Western Australia
Study design
Allocation
Randomised controlled trial
Intervention model
Parallel
Primary purpose
Treatment
Masking
Blinded (masking used) (Investigator, Outcomes Assessor)
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
Screening and enrolment will be conducted during or after an ED visit. The study population is the primary identified carer of a person with dementia attending a participating ED who meets the following criteria: 1. Age is greater than or equal to 65 years 2. Established documented diagnosis of dementia, confirmed with MMSE <13/30 (or equivalent when MMSE is not an appropriate assessment) in ED 3. Identified as having a life expectancy of less than 12 months, operationalised as FAST scale 6d-7e (doubly incontinent or loss ability to speak more than 6 words, unable to stand, unable to sit upright, unable to smile) 4. Medicare eligible Furthermore, the carer must reside within a 30km travel distance of the enrolling ED or be able to use a telehealth option.
Exclusion criteria
1. No identifiable carer as a surrogate medical decision maker 2. Person with dementia is under the care of the Public Guardian 3. Death is considered imminent (within one week) 4. Person with dementia is a current patient of a specialist palliative care service, or a prior patient within the preceding 12 months 5. Significant symptoms (eg. pain, dyspnoea) requiring a referral to specialist palliative care on this presentation 6. Carer requires translation of written and spoken language
Outcome results
None listed