Understanding and integrating the needs and preferences of people living with dementia in the inpatient setting: a qualitative study.

Abstract

Background: People living with dementia (PLWD) have poorer outcomes than cognitively normal people when admitted to hospital. One reason for this difference is related to the challenges in learning and integrating the needs and preferences of PLWD into clinical care. We aimed to obtain a range of perspectives on the challenges in supporting PLWD in hospital and explore opportunities for improvement.

Methods: Using an exploratory qualitative study design, we conducted interviews with nine people supporting PLWD (current / ex-spouses or children of PLWD) and 11 nursing, medical and allied health staff members at a single Australian hospital. Data were thematically analysed using a framework approach.

Results: Participants described how best practice in supporting PLWD included understanding and integrating patient needs and highlighted the importance of family and the multidisciplinary team working in partnership. A number of factors inhibiting quality care provision were described, including uncertainty around responsibility for communicating with families to understand needs of PLWD; unsuitable tools; lack of opportunities for families to communicate with staff; and, resource and environmental constraints. Participants discussed potential for improvement, emphasising the need for a pre-emptive, rather than reactive solution. They expressed support for the idea of a 'hospital admission kit', containing both information about PLWD and their familiar items. Implementation considerations were also noted, with various perspectives on the timing of initiation, updating, responsible person(s), format, content and how it should be incorporated into clinical workflows.

Conclusions: We found that hospital staff and those supporting PLWD felt that integrating the needs and preferences of PLWD into hospital care was important. The concept of a pre-prepared 'toolkit' that was ready in the case of a need to attend hospital was felt to be valid and potentially helpful. More work is required to design aspects such as format, content and the workflows needed to generate accountability and reliability in creating, updating and incorporating it into hospital care.

Clinical trial number: Not applicable.