Developing a toolkit to improve experiences of general hospital outpatient appointments for people living with dementia

Introduction: Many people living with dementia have one or more physical health conditions. For example, they may have heart problems, cancer, diabetes or vision difficulties. These conditions are likely to require attendance at hospital appointments, which can be difficult for people with dementia and those who support them.

Aims: To co-design and test a toolkit to help staff improve experiences of hospital outpatient appointments for people living with dementia and their families.

Methods: We undertook an ethnographic study in five general hospital outpatient departments. Interviews, conversations, and observations with people with dementia, their supporters and hospital staff were used, alongside reviews of published and grey literature, to understand the challenges of hospital appointments and what can help. The findings informed twelve workshops with staff and people with lived experience to co-design a toolkit to support people with dementia and their families at hospital appointments. The feasibility of implementing the toolkit was explored in two hospital departments in two NHS Trusts over four months. The same ethnographic methods as Stage 1 were used to evaluate and refine the toolkit and accompanying resources.

Results: Multiple potential challenges of hospital appointments were identified, including difficulties with: sharing or identifying dementia; communication and information sharing; environments and wayfinding; and involving and supporting families. During the co-design stage, a toolkit and accompanying resources were developed addressing each of these areas. Feasibility testing found the toolkit to be acceptable and feasible, with suggested refinements including changes to some wording and formatting to improve accessibility and greater attention to sharing the toolkit resources ahead of appointments.

Conclusion: The toolkit and accompanying resources form the first ever evidence-based approach to improving experiences of general hospital outpatient care for people living with dementia and their supporters.