“Knowing the person” - The use of families’ knowledge and expertise in delivering care and valued outcomes for people with dementia on acute wards

Background: A quarter of general hospital patients have dementia and they have worse experiences and outcomes of care than people without dementia. At home, many people with dementia are supported by family members who often have an in-depth understanding of the person. However, few previous studies have explored the involvement of families, or their knowledge, in the planning or delivery of hospital care. Aims: To explore how the use of families’ knowledge and expertise affects experiences and outcomes of hospital care for people with dementia. Methods: Ethnographic data were collected from two elderly care wards via observations, conversations and interviews with people with dementia, their families and staff. In total, 400 hours of observations and 47 interviews were undertaken across two 7-9 month periods. Results: People with dementia often experienced a lack of connection on multiple levels - from pre-hospital life as well as life on the wards - where they could spend long periods of time without interacting with anyone. There was great variation in the degree to which staff used opportunities, or were able, to make connections with people with dementia. The knowledge and expertise of families played a crucial role in facilitating more meaningful interactions and demonstrated how person-centred connections and care are possible in busy hospital settings. Despite such benefits, the involvement of families and their knowledge was not routine. Opportunities to bring together the different perspectives and knowledge of families, staff and people with dementia were often missed, resulting in difficulties in care provision and decision-making, extended lengths of stay, and decisions which did not always meet the needs or wishes of people with dementia. Conclusions: This study demonstrates the many benefits of involving families and their knowledge in care, advocating for family involvement, alongside the involvement of people with dementia, to become a more routine component of hospital care.