As many as one in four hospital inpatients may have dementia or another type of cognitive impairment such as delirium. These patients often need assistance with eating, drinking, and using the toilet, as well as with understanding and consenting to treatment while they are in hospital. However, these needs are not always immediately recognisable.
The Royal College of Psychiatrists recommends that hospitals use a system to ensure staff are aware of a person’s cognitive impairment, and reported in 2019 that most hospitals are using some type of system. However, the College does not recommend the form such a system should take, and as existing systems are implemented locally, they are likely to vary in effectiveness and cost. There is also no consensus over the associated ethical and legal issues such as patient autonomy, consent, stigma, inadvertent disclosure, and privacy.
This project collected information about the kinds of visual systems used to identify patients in NHS hospitals across the UK with cognitive impairment, so that care can be tailored to their needs.
This research programme was carried out over two phases. Phase 1 involved a UK-wide survey, an analysis that explored legal and ethical considerations, and a qualitative study on the use of visual identifiers for hospitalised people with dementia or symptoms of dementia. Phase 2 involved co-design with hospital staff of the principles to underpin use of a visual identification system for hospitalised people with dementia.
1. UK-wide survey on the use of visual identifiers for hospitalised patients with dementia
The first phase of this project sought information on visual identification systems used to recognise hospital patients with a diagnosis or symptoms of dementia. The survey asked NHS staff with first-hand experience of caring for hospital patients with dementia for their views on systems currently in use. It provided pictures of various systems, and participants were able to add information on other systems if they wished. It was conducted through our online research platform Thiscovery.
This research activity was led by THIS Institute.
2. Analysis exploring legal and ethical considerations of the use of visual identifiers for hospitalised people with dementia
A report on the ethical and legal considerations arising from the current and potential use of visual identification systems in those with suspected or confirmed dementia in the acute care setting is complete. The report was developed iteratively, and the principles and analyses were refined following the feedback received at an Expert Collaborative Group meeting in July 2020.
The report and a standalone Key Principles document can be accessed here.
This research activity was led by a team from the PHG Foundation, University of Cambridge.
3. Qualitative study on the use of visual identifiers for hospitalised people with dementia
The qualitative study included interviews with healthcare professionals as well as people with dementia and their carers on the topic of using visual identifiers for hospitalised people with dementia. Interviews took place with healthcare professionals from three hospitals. The COVID-19 pandemic impacted on the ability of hospital staff to find free time to take part in the study, but interviews began in late 2020 and continued into 2021. Interviews with people with dementia and their carers were undertaken instead of ethnographic observations in hospitals, which were not possible due to the COVID-19 situation.
This research activity was led by the University of Leicester and the University of Aberdeen.
4. Co-designing principles of using a visual identification system for hospitalised people with dementia
This stage of the study aimed to translate the findings from previous parts of the project to co-design with patients and carers what are the principles of a functional visual identifier. The goal was to produce a set of prioritised design principles that would ideally underpin any visual prompt system used to identify people with dementia in a hospital setting.
Due to the pandemic, it was not possible to bring clinically vulnerable people together in person for co-design events at the time. Instead we held online co-design meetings with the carers of people with dementia and staff. The workshops used evidence-based scenarios derived from earlier phases of the study, voiced by actors, to explore hypothetical scenarios, using the method of asking “what if ….” questions to help shape the principles for the design of a visual identification system.
This activity was led by the Point of Care Foundation and Glasgow School of Art.
This study is funded by the Health Foundation’s grant to The Healthcare Improvement Studies Institute (THIS Institute). It is independently led by THIS Institute and supported by PHG Foundation; the University of Leicester; the University of Aberdeen; and the Point of Care Foundation. The study was reviewed by the Cambridge Psychology Research Ethics Committee.