Caring for persons with Dementia: a qualitative study of the needs of carers following care recipient discharge from hospital.

BACKGROUND: A randomised clinical trial titled the Carer End of Life Planning Intervention (CELPI) in people dying with dementia evaluated the effect of carer education and support about palliative care on care recipient outcomes. We present a pre-planned qualitative analysis of data collected during the CELPI trial in which needs of carers randomised to the study intervention group were assessed using a novel instrument (Carer Needs Directed Assessment in Dementia (CANDID). This tool aimed to identify carers' perceptions of their own and their care-recipients' needs and is an important step in identifying support provision for dementia-specific, palliative cares services upon hospital discharge. METHODS: The CANDID tool was designed to identify the needs and experiences of primary carers and of their care recipients during the last twelve months of the care recipient's life. The tool consisted of 33 open-ended questions evaluating: symptom management, emergency contacts, advance care planning, carer's perception of the care recipient's future needs, carer's current needs, and a proposed current and future care plan. The researcher's philosophical assumption of interpretative phenomenology informed the study and approach to data collection and analysis. Qualitative data collected during interviews using this tool were thematically analysed in five steps: compiling, disassembling, reassembling, interpreting and concluding. An interpretation of participants' reality emerged from their common experiences and the subjective meanings assigned to actions attached to the phenomena studied. RESULTS: Thirty carer participants were included. Analysis identified three major themes: Carers' perceived stressors, systemic barriers to care provision, and future planning. Issues identified included barriers to accessing supports, carer health and division between roles, financial burden, familial conflicts, adquate care in hospital and aged care facilities, concern about future needs, and end-of-life discussions. CONCLUSION: The CANDID tool enabled an evaluation of carer needs and concerns. Identifying those needs may inform a referral to palliative care services where the level of management required may be benenficial for both the person living with dementia and their primary carer. TRIAL REGISTRATION: Australian Clinical Trials Registration: (ACTRN12619001187134).

Subcutaneous Levetiracetam and Sodium Valproate Use in Palliative Care Patients.

Palliative care patients experience seizures in different stages of their disease and may not tolerate oral medications toward the end of life. Subcutaneous infusions of levetiracetam and sodium valproate are increasingly used off-label. This retrospective analysis (conducted from January 2019 to July 2020 in Australia) reports the effectiveness and adverse effects of levetiracetam and sodium valproate delivered via subcutaneous infusion. The doses ranged from 500 to 3000 mg/d of levetiracetam and 500 to 2500 mg/d of sodium valproate. The concentrations ranged from 20 to 83 mg/mL of levetiracetam and 20 to 50 mg/mL of sodium valproate. Subcutaneous levetiracetam was given for a median duration of 6.5 days, with no seizure recurrences in 75% of patients and no reported adverse effects in any patients. Subcutaneous sodium valproate was given for a median duration of 3.5 days, with no reported seizure recurrences in 83% of patients and one report of a localized skin reaction. This analysis suggests that subcutaneous levetiracetam and sodium valproate can effectively control seizures in palliative care populations, with minimal localized reactions.