Written by Dr Patrick Hogan (UCL Institute of Health Informatics, Central and Northwest London NHS Foundation Trust), Dr Rachel Cowan (Nottingham University Hospitals NHS Trust) and Rachel Thompson (Dementia UK, The Lewy Body Society), on behalf of the Dementia, Delirium and Brain Health SIG.
World Delirium Awareness Day (WDAD) 2026 is taking place on 11 March with the theme this year of “Voices of Delirium”. This is a timely call to action given delirium is still frequently unrecognised or mislabelled1, leaving many people without a name for what happened to them and without a clear way to have their voices heard. Delirium commonly affects older people, often during acute illness, and can lead to adverse outcomes, including long-term cognitive impairment. While efforts have been made to highlight how distressing delirium can be for patients and their caregivers, public awareness is relatively limited. Even those who develop delirium may be unsure of what happened to them and struggle to articulate their experiences. WDAD 2026 is an opportunity to reflect on why these voices are not heard and to consider practical ways to amplify them.
Unlike dementia and other mental health conditions, delirium lacks consistent visible advocacy. While delirium represents a major risk factor for dementia, it is often not recognised as a distinct entity by the public and may be confused with mental illness generally. This can lead to considerable distress when a sudden change in mental state gets mistaken for dementia or may result in treatment delays when appropriate intervention is not initiated. National public health campaigns for other life-threatening conditions, such as the FAST campaign for stroke, have been successful in improving rapid identification of emergencies2. However, no such campaign exists for delirium which could assist with earlier recognition and treatment to prevent harm. Greater messaging is required to increase public awareness of delirium and encourage people to seek help promptly when symptoms arise.
While delirium awareness is increasing among healthcare practitioners, inconsistent language continues to be used to describe the condition, potentially under-emphasising the seriousness of the situation3. When those with delirium and their significant others do not have a name for the condition, they have no way to report on their particular experience and those voices are lost. Even when delirium is recognised and named, these individuals’ thoughts and opinions may be considered unreliable and therefore discounted. Recollections of delirium can sometimes be patchy or inconsistent due to the delirium itself or co-existing dementia. Nevertheless, the associated trauma may persist, while the affected individual struggles to describe the cause of their distress. For these reasons, all healthcare professionals need to be highly attuned to recognising delirium and listening to patients and their significant others to validate their experiences and guide recovery.
Prevalence of persistent delirium at twelve-months post-discharge is estimated to be as high as one in six4. Persistent delirium at discharge is associated with worse outcomes, yet routine clinical review after an episode of delirium is rare, though proposals for community follow-up services have been offered5. This gap in follow-up risks leaving ongoing cognitive and functional difficulties unrecognised, with patients and families left without a clear explanation of what happened or who to turn to. In the absence of structured review, concerns raised by patients and significant others may be dismissed as “just confusion” or attributed solely to dementia, and opportunities to identify and address reversible contributors may be missed. Embedding a standardised post-delirium review would help ensure that the voices of delirium are heard beyond discharge.
Research into delirium is ever increasing but is disproportionately concentrated in peri-operative and intensive care settings, which typically do not include the oldest and frailest individuals. Research in medical, gerontological and community settings is comparatively limited, meaning frailty and more advanced age are generally under-represented. To address this, delirium research needs inclusive study designs and consent pathways that enable participation of the oldest and frailest people, alongside meaningful involvement from patients and families in shaping research questions and outcomes. People with delirium, or those with delirium risk factors, are often excluded from research more broadly, either because they lack mental capacity to consent to participate or due to systematic exclusion criteria. Many studies also prioritise clinical outcomes rather than those that matter to patients and their families. The UK has no dedicated Patient and Public Involvement and Engagement (PPIE) groups specifically dedicated to delirium, meaning researchers often rely on groups for older people, frailty or dementia. This risks treating delirium as peripheral to other agendas, rather than as a distinct experience with distinct priorities. Establishing delirium-specific PPIE structures would help ensure that studies reflect what it is like to live through delirium and recover from it.
WDAD 2026 is an opportunity to move beyond raising awareness and towards meaningful change. The theme “Voices of Delirium” reminds us that recognition is only the first step: people need language for what happened, clinicians need to listen and respond to concerns, and services need to offer support that extends beyond discharge. Practical action could include clearer, consistent terminology in clinical practice; public-facing messaging that frames delirium as a medical emergency requiring prompt assessment; and routine post-delirium review that validates patient and family accounts and provides safety-netting and onward referral. In research, amplifying these voices means designing studies that include the oldest and frailest people and embedding delirium-specific PPIE so priorities reflect what matters most to patients and families. By ensuring delirium is named, heard, and followed up – at the bedside, in the community, and in research – we can reduce avoidable harm and help people make sense of an experience that too often goes unspoken.
