Table 1

Summary of resident data collected by care home staff, outcome measures and time schedule

Data collected and tool usedPre-interventionMonthlyAt 6 months or death
Socio-demographicsAge, gender, ethnicity, existing medical conditions, stage of dementia on Functional Assessment of Staging of Alzheimer’s Disease scorexxx
Quality of dyingMeasure to assess quality of death using CAD-EOLD (Comfort Assessment in Dying with Dementia)47 48 xxx
Quality of life of the person with dementiaEQ-5D-5L38 self-rated health index and visual analogue scale of current health statexxx
Neuropsychiatric Inventory (Neuropsychiatric Inventory–Questionnaire)Measure to assess psychiatric state of resident using NPI-Q39 xxx
PainMeasure to assess level of pain using PAIN-AD35 xxx
Quality of lifeEQ-5D-5Lxxx
ICECAP Supportive Care MeasureHealth economic measure using ICEPCAP-SCM39 xxx
ICECAP-O measure (CEpop CAPability measure for Older people)Health economic measure using ICEPCAP-O49 xxx
Cohen-Mansfield Agitation InventoryMeasure to assess resident agitation36 xxx
ICECAP Supportive Care Measure using Think AloudHealth economic measure using ICEPCAP-SCM using Think Aloudxxx
ICECAP-O measure using Think AloudHealth economic measure using ICECAP-O using Think Aloudxxx