An Exploration of Relationship Centred Approaches for the Care of Patients and their Family Carers with Delirium Superimposed on Dementia in Hospital Settings: an Appreciative Inquiry

Background - There are approximately 982,000 people living with dementia in the UK. People with dementia admitted to hospital are at risk of developing delirium. Patients with delirium superimposed on dementia (DSD) have higher mortality rates, longer hospital stays and further cognitive loss. The role of family is often recommended as a resource to inform and support how patients with dementia’s needs are understood. However, little is known about how people living with dementia admitted to hospital are supported when they experience delirium and what interventions, involving healthcare professionals and staff, may improve care and experience. Methods - The study involved three phases of data collection. A scoping review of studies designed to explore what supportive interventions, involving family carers and healthcare professionals when providing care for patients with DSD in hospital, were completed to identify the gaps in the evidence. Findings from the review provided the context and questions for the primary data collection. A modified 4D Cycle of Appreciative Inquiry (AI) structured the research approach and data collection working with participants in one district general hospital in England. Observation in seven ward environments, and semi-structured interviews using a blended approach of storytelling and emotional touchpoints were used to understand how people with, or at risk of DSD, received care and how staff’s responses, activities and management of the environment affected patient and family outcomes. Ethical approval reference number: 280075/22/EE/0144. Results - The scoping review included fifteen studies that focused on educational, and system change to improve the care of people with DSD. Family involvement in these studies ranged from enabling staff’s baseline assessment of delirium, commenting on different resources and measures designed to support their involvement in care, simulating their presence for the person with DSD and volunteer involvement as a proxy for family care. The evidence of effectiveness was mixed. Interventions to support personalised care and give family carers and staff confidence were positively evaluated. There was very little evidence of what enabled family carers to participate in care and work with staff despite the studies highlighting the importance of their involvement. Benefits to patients over time were unclear. Seventy-four people with DSD across seven wards were observed. Interactions with staff were variable with noticeable differences between how qualified and unqualified staff anticipated or responded to people with DSD symptoms. There was evidence of how family members’ knowledge of the patient could directly inform care practices. There were few observed opportunities for family involvement. Thirteen interviews with family carers (3), nursing staff (3), healthcare assistants (4) and other staff groups (3). Themes that were identified as likely to influence and improve the care and understanding of supporting patients with DSD included: education, addressing cultural influences, understanding of DSD, environmental challenges and relational care. The findings supported a focus that builds on what currently works well and how this may be developed across all healthcare systems to support patients with DSD. Conclusions - Delirium superimposed on dementia (DSD) is often conflated with dementia and/or being old by healthcare professionals and families. Distinguishing between delirium and dementia can be challenging. The review findings provide evidence for clinical practice when selecting existing interventions and approaches involving family in supporting patients with delirium superimposed on dementia (DSD). Family with prior experience and practitioners with personal experience, or in regular contact with patients, were better equipped to recognise symptoms and respond. The evidence identifies the potential of family to mitigate the risk of delirium and improve patient outcomes. Appreciative inquiry provided a structure for family carers and healthcare professionals to recognise and share good practice. The approach supported small, effective, cultural and practical changes aligned with the needs of patients with DSD and their family carers, and the systems of care related to DSD within the hospital setting. Additional work is needed to focus on specific areas, such as interventions, education and training to support patients with DSD, that are developed in partnership with family carers, which account for time constraints and competing demands of a busy healthcare environment.