Background Approximately 70% of people living in care homes have some form of cognitive impairment. As a result, families are often involved in discussions and decisions about appropriate care and treatment as the person’s health deteriorates. Failure to have these conversations can lead to uncertainty and potential distress at the time of deterioration. This paper will explore ways to empower families to think ahead and prepare for changes in their relative’s health.

Methods Data were collected as part of two studies. Semi-structured interviews were carried out with 25 current and bereaved family members and 38 members of care home staff. In both studies, analysis occurred concurrently with data collection in line with the constructivist approach to grounded theory.

Results Family involvement in decisions about potential deteriorations and end-of-life varied but families could potentially hold a powerful position in decision-making. A minority of families had discussed what their relative would want to happen when their health deteriorated. In the care home, although staff valued advance care planning and some families reported having discussion about future deterioration with care home staff, the majority of families felt they had not had adequate opportunity to prepare for change. This was often reported even when written plans had been completed. Staff and families acknowledged the daunting and potentially distressing nature of conversations about potential deterioration and identified a range of topics for which greater education might empower families to be more informed and involved in discussions.

Conclusion Our results suggest that even when written care plans exist, families may still not feel prepared to be actively involved in discussions and decisions regarding deterioration in their relative’s health. Two potential ways to empower families to prepare for change could be providing educational sessions to families and increasing staff confidence in discussing potential deterioration and end-of-life.