CELPI: a randomised trial of a Carer End of Life Planning Intervention in people dying with dementia.

INTERVENTION: 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 c CONDITION: Support for carers of people living with advanced stage dementia; ; Support for carers of people living with advanced stage dementia Neurological ‐ Dementias PRIMARY OUTCOME: Proportion of people with dementia dying at their preferred location, as communicated by the person or their carer. The carer will nominate this at baseline assessment by phone or in person.[Time of death from up to 12 months post enrolment] 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. SECONDARY OUTCOME: 1. Proxy (carer) reported quality of life of the person with dementia using Quality of Life in Late‐Stage Dementia (QUALID)[1. Measured every three months up to 12 months via telephone contact with participant‐carer, unless death intervenes, ] 2. Carer stress using Modified Caregiver Strain Index (MCSI)[2. Measured every three months up to 12 months via telephone contact with participant‐carer, unless death intervenes] 4. Number of ED attendances post enrolment (with and without subsequent admission to hospital)[4. Count of number of ED attendances by the persons with dementia, determined by electronic health record, confirmed via telephone contact with participant‐carer. If confirmed with participant‐carer, assessed every three months up to 12 months unless death intervenes. ] 6. Days spent by person with dementia in nominated preferred location of care post enrolment[6. Calculated to time of death from up to 12 months post enrolment, confirmed via telephone contact with participant‐carer] 5. Hospital occupied bed days[5. Count of number of hospital attendances by the persons with dementia, determined by electronic health record, confirmed via telephone contact with participant‐carer. If confirmed with participant‐carer, assessed every three months up to 12 months unless death intervenes. ] 7. Number and type of medical interventions in last seven days of life[7. Determined by electronic health record, confirmed via telephone contact with participant‐carer] 3. Carer quality of life using EQ5D‐5L [3. Measured every three months up to 12 months via telephone contact with participant‐carer, unless death intervenes,] 8. If the person with dementia dies in the follow up period, bereavement risk in the carer using the Modified Bereavement Risk Index (MRBI)[8. Measured at first follow up post death of the person with dementia via telephone contact with participant‐carer]