Participants

This current study was linked to a parent study [Pro-CARE], funded by the Alzheimer’s Society, conducted in England, examining refusals of care in advanced dementia. Figure 1 shows the overall research design. All participants in the current study had previously taken part in the parent study. Participants were care-home staff members supporting a resident and family carers supporting a person living at home. All care recipients had advanced dementia and were aged 65 or above. These two caregiver groups were chosen to enable learning from each distinct setting to contribute to the development of comprehensive educational materials for caregivers of people with dementia. Dementia severity was assessed as part of eligibility for the parent study using the Frontier Dementia Rating Scale (FRS), which is a well-validated, informant-based, staging tool incorporating aspects such as behaviour, self-care, and household chores (Mioshi et al., 2010). Dementia sub-type was determined from General Practitioners as part of the parent study.

Pro-care study design.