Development and Validation of the End-of-Life Assessment Tool for Advanced Dementia: A Multi Method Study

To develop and validate the End-of-Life Care Assessment Tool for Dementia (EoLC-ATD).

A methodological study with multiple phases.

Five sub-studies comprising: a review of 90 validated dementia measures to compile an item bank of advanced dementia symptoms; focus groups with registered nurses on advanced dementia symptom identification and relevance of item bank inclusions; Delphi surveys with dementia experts seeking consensus on the EoLC-ATD constructs and items; pilot testing of the EoLC-ATD; and field testing of the EoLC-ATD in persons with dementia.

The item-bank included 180 symptoms, most of which focus group nurses (n = 17) identified as occurring in advanced dementia. Delphi surveys with dementia experts (n = 31) achieved 70% consensus for 25 of 26 EoLC-ATD items. Pilot testing of the EoLC-ATD by two nurses in eight persons with dementia showed good agreement for six constructs (Cohen's Kappa 0.856-0.927) and 26 items (Cronbach's alpha 77.0). An 'other sympto' item was included following RN recommendation. The 27-item EoLC-ATD field tested by 17 nurses in persons with dementia (n = 113) accurately identified advanced dementia symptoms (Cronbach's alpha 77.0, p < 0.001). Mortality at 180 days after baseline EoLC-ATD was significant (p < 0.001, area under the ROC curve p = 0.769).

The EoLC-ATD accurately and reliably identified symptoms of advanced dementia.

The EoLC-ATD provides registered nurses with a single measure of advanced dementia symptoms that will help in identifying symptom-responsive palliative care requirements.

The EoLC-ATD will address the current lack of a validated dementia symptom measure for use by aged care home registered nurses to identify unique palliative and end-of-life care needs according to presenting symptoms in persons living with advanced dementia.

STROBE Statement for cohort and mixed methods studies.

An eight-member Expert Advisory Group, which provided guidance and advice throughout the study, was composed of three carers of persons living with dementia, two dementia care clinicians, a dementia care clinical educator, and two dementia clinician researchers.