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 aims to collect 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 has two phases. Phase 1 involves a UK-wide survey, an analysis that explores 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 involves 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 seeks information on visual identification systems used to recognise hospital patients with a diagnosis or symptoms of dementia. The survey asks NHS staff with first-hand experience of caring for hospital patients with dementia for their views on systems currently in use. It provides pictures of various systems, and participants can add information on other systems if they wish. It is conducted through our online research platform Thiscovery.
This research activity is 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 includes 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 are underway with healthcare professionals from three hospitals. The COVID-19 pandemic has impacted on the ability of hospital staff to find free time to take part in the study, but interviews began in late 2020 and are continuing into 2021. Interviews with people with dementia and their carers are being undertaken instead of ethnographic observations in hospitals, which are not possible due to the current COVID-19 situation.
This research activity is 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 will aim 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 will be 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.
The pandemic delayed the start of this phase of work. Workshop activities will begin in summer 2021. The workshops aim to develop design rules for creating visual aids to identify people with dementia. The workshops will use evidence-based ‘scenarios’ derived from earlier phases of the study to explore hypothetical scenarios, using the method of asking ‘what if…’, questions to help shape and define rules for effective design.
This activity is led by the Point of Care Foundation and Glasgow School of Art.
This study is funded by the Health Foundation’s grant to THIS Institute. It is led independently by THIS Institute.