Table 1 Outcome measures completed at each study assessment

Hospital Anxiety and Depression Scale (HADS) [23]

Anxiety and depression subscales range 0–21 with cut-off of ≥8 indicating clinically significant depression or anxiety.

√

Short Form 12 health –related quality of life Survey (SF-12) [24]

Comprises “physical” and “mental” health related quality of life. Scores calculated as t-scores with a USA general population mean score set at 50 and scores higher than 50 indicating better health than the general population [24]. Questions refer to past four weeks.

√

Zarit Burden Interview (ZBI) 22- item version [25]

Score ranges from 0 to 88 with higher scores indicating higher carer burden. No cut-off score for clinically significant level of burden identified.

√

Brief Coping Orientation to Problems Experienced (Brief COPE) [26]

28 items with 14 subscales (See Table 2) of which six are described as dysfunctional: self-distraction, denial, substance use, behavioural disengagement, venting and self-blame [46]. Each subscale has two items with a possible range of 2–8 with higher scores indicating higher use of this strategy.

√

Inventory of Complicated Grief (ICG) Short-Form Pre-Loss version

The original ICG [28] was modified to be suitable for carers before the death of their relative as obtained from the authors Mitchell et al. [22]. Wording of items modified for pre-death assessments to refer to symptoms “since diagnosis/person’s illness” instead of “since death”. Sixteen items with a score range of 16–80 with higher scores indicating higher levels of grief. Carers asked to indicate how they had been feeling over the past month.

√

Satisfaction with Care at EOL in Dementia (SWC-EOLD) Scale [27]

Possible scores 10–40 with higher scores indicating greater satisfaction with EOL care. No cut-off score for high or low satisfaction.

√