Development and validation of the end-of-life assessment tool for advanced dementia: a multi method study

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

Design: A methodological study with multiple phases. 

Methods: 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. 

Results: 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). 

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

Implications for the Profession and/or Patient Care: The EoLC-ATD provides registered nurses with a single measure of advanced dementia symptoms that will help in identifying symptom-responsive palliative care requirements. Impact: 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. 

Reporting Method: STROBE Statement for cohort and mixed methods studies. 

Patient or Public Contribution: 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.