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

To test whether an intervention triad of carer education, end of life planning and palliative care reduces the proportion of recipients dying in hospital. CELPI is the acronym for the name of the study: Carer End of Life Planning Intervention. The CELPI Carer Directed Needs Assessment is a self-designed assessment that will be used during the intervention phase of this study to assist carers to develop a care plan to meet their current and future care needs as well as those of their care recipient. An intervention will be implemented after the baseline assessments have been conducted by the Recruiter (Research Nurse) and the participants have been randomized to either the control group or the intervention group. The Intervention Clinician will receive an electronic notification of those participants assigned to the intervention group along with a PDF of patient admission data from the Recruiter. Upon receipt of the email, the Intervention Clinician will contact the participant (carer) to make a single appointment to meet them in their homes or at a location of their choice at a time that is convenient to them. The length of the visit is expected to be between 1.5 - 2 hours long. Each participant will receive a single visit. Subsequent visits may be required but are not mandated. During the 1.5 - 2 hours visit: 1. A self-designed assessment- the CELPI Carer Directed Needs Assessment (CCDNA) will be used to establish the carers perception of their care recipient’s current and future needs as well as their own. No assessments will be conducted on the care recipient (patient) or the carer. 2. Within the CCDNA is the carer-reported Symptom Assessment Scale (SAS). Use of the SAS will establish whether or not there have been any changes since the baseline assessment was conducted. The carer will report on their perception of their care recipient’s current status. Should the rating score indicate a palliative care referral is required, the clinician will discuss whether the carer wants a referral to be made, the process of referral to Silverchain and then contact the Silverchain Palliative Care Nurse Practitioner for her immediate response. 3. The carer will be educated on the use of SAS so that he/she can monitor their care recipient daily. 4. The CCDNA contains questions pertaining to the carer's understanding of dementia, the stages of dementia, the process of dying and whether or not they want to know more about it. Issues regarding equipment needs, advance care planning, finances, social support and in-home palliative care vs aged care facility admission will also be discussed. 5. The clinician will ensure the carer understands the referral process, who to call in an emergency and have the resources (i.e. contact numbers) of service providers such as The Independent Living Centre, Continence Management, Carers WA, Silverchain, Palliative Care WA and Alzheimer’s WA to draw upon as required. Participants will also be given the Palliative Caring- Information for families and carers who are caring for a person with a life-limiting illness or condition provided by Palliative Care Western Australia. This booklet discusses all aspects of care and provides resources for carers to draw on. 5. A collaborative care plan will be documented. Should a carer express concern about their care recipient who is palliative and who resides in a residential aged care facility, the referral will be made to the Metropolitan Palliative Care Consultancy Services. The Intervention Clinician is an early career researcher and occupational therapist.