Using signs and symbols to improve the care of people with dementia
3 February 2021
A picture of small blue flower is just one example of a symbol used in hospitals and care homes to identify patients with dementia. These visual identifiers, which can also include wristbands or ribbons among other signs or symbols, help staff to recognise people with dementia (or sometimes other forms of cognitive impairment) quickly and easily, and adapt care accordingly. Visual identifiers can be displayed on clothing, at patients’ bedsides or in patient notes. This is a seemingly simple and innocuous technology, but one which raises complex considerations.
The PHG Foundation has been working in collaboration with The Healthcare Improvement Studies Institute (THIS Institute) to explore the ethical and legal considerations around the use of visual identifiers for those with suspected or diagnosed dementia in the acute care setting. Our report contributes to the DA VINCI project - a larger body of research to inform, design and evaluate the use of visual identifiers, and enrich the evidence about potential opportunities and challenges associated with these tools. If appropriate, the project aims to co-design a system that takes stakeholder preferences, including those of patients, into account.
Why use visual identifiers?
People with dementia may have difficulties in communicating their needs and preferences, or require specific assistance. The sometimes confusing and isolating impact of hospitalisation can exacerbate these difficulties. The pace of activity on busy acute wards places high demands on staff and it isn’t always obvious which patients have dementia and might need tailored care and support. Visual identifiers have been introduced into many hospitals to act as a corrective to this concern.
The Butterfly and the Forget-me-not schemes, for example, both employ symbols over patients’ beds and in their case notes to indicate that they have dementia or cognitive impairment. Used properly, visual identifiers should trigger a conversation with the patient – their likes, dislikes, habits and values – so that these can be taken into account throughout their hospital stay. For this reason, they are widely considered to be conducive to ‘person centred’ care: that is, helping caregivers to recognise and respond to the person at the heart of care, rather than focusing on the condition.
Help or hindrance?
Although visual identifiers intend to, and often do, support high quality care, some research indicates that these seemingly simple and harmless technologies might paradoxically have the reverse effect. These potential challenges are covered in depth in our report, but include:
- Use of the visual identifier: given the fast turnover of patients in acute care, signs could be attached inconsistently or inappropriately (e.g. to a patient who has moved into a bed previously occupied by somebody that has dementia.)
- Interpretation by healthcare professionals and their perception of the person with dementia: the visual identifier could be used as a proxy for a diagnostic label, simplifying and stereotyping staff interactions with patients. It may, for example, lead to false or overstated assumptions about the patient’s lack of capacity (e.g. that they need assistance at mealtimes or cannot walk independently). Assigning a label of dementia, then, may overshadow the person and become a marker of stigma, resulting in outcomes at direct odds with the intended purpose of the identifier.
- Amount of information the identifier reveals, and to whom: the visual identifier has the potential to violate the privacy of the individual by disclosing their diagnosis beyond the clinical team. This harm needs to be balanced against the potential benefits of the patient’s needs being recognisable more broadly. For example by non-clinical hospital staff who have limited yet meaningful interactions with patients, such as receptionists, cleaners and porters.
Resolving issues that underpin the use of identifiers such as knowledge of dementia, the medical culture of the ward, and who may recognise these signs, is vital for their ethical and effective use in a way that maximises benefits and minimises harms for patients.
Key principles for visual identification systems
Emerging from the PHG Foundation’s ethical and legal analysis of the use of visual identifiers in dementia are a set of key principles. These feature established bioethical principles such as beneficence (doing good) and autonomy (self-determination), as well as those influencing and influenced by the development of person centred care approaches.
Taken together, these principles emphasise the importance of embedding the visual identifier within a wider system of care. There is a difference between the tool itself (the symbol) being used in isolation, and being used as part of a broader care response. One aspect of this is that their use is underpinned by appropriate staff education, including a shared understanding of the concept of dementia and the varying implications and effects it can have on different individuals. Another, is an emphasis on the importance of the relational aspects of care, such as compassion. Evidence shows that positive interactions with healthcare professionals can help patients feel respected, listened to and taken seriously, promoting their dignity and self-worth.
Anecdotal evidence points to the usefulness of visual identifiers for both healthcare professionals and patients, but the lack of evidence base and inconsistency in their use act as barriers to their effective implementation. It is for this reason that the DA VINCI research project is so valuable – bringing key stakeholders together to assess the value of visual identifiers, map current practice, explore the legal and ethical challenges and ultimately ensure that these tools are in the best interests of patients.