5 Top tips for dealing with distress in delirium: World Delirium Awareness Day March 11, 2020
Helen Bowden is a Senior Occupational Therapist and researcher on the Delirium and Population Health Informatics Cohort (DELPHIC) study, working in the MRC Unit for Lifelong Health and Ageing at UCL. She tweets @hbowden2017
As we seek to understand our patients’ experience of delirium, comprehensive strategies to reduce any associated distress are urgently needed. This applies not only during the episode of delirium but also for the distress that can continue after a hospital admission for weeks and months.
- Detect and manage delirium
Prompt detection of delirium is essential. Without a formal diagnosis, we will miss opportunities to recognise the organic basis for the behaviour and symptoms. A useful screening tool is the 4AT, and the PINCH ME mnemonic can help identify potential underlying causes [1, 2].
- Measure distress
Find out what your patient is experiencing. If we don’t enquire about distress our patients are unlikely to volunteer it. Start by asking open questions, “How have you been sleeping?” “Have you felt distressed or worried?” “Have you been bothered by any vivid dreams?” “Sometimes, when people are in hospital, they can see or hear things that are not there or that seem strange. Do you think you have experienced this?”
Distress appears to arise regardless of subtype (hypoactive, hyperactive and mixed-type), for patients who recollect it (approximately 1/3) . Feelings of fear, panic and anger are common, as are shame, guilt, humiliation and fear of recurrence upon recovery . The severity of distress is linked to the extent of recall of the delirium episode with the presence of delusional thoughts and hallucinations contributing most .
There are instruments to quantify distress in delirium. The Delirium Burden (Del-B) , Delirium Experience Questionnaire (DEQ)  and Distress Thermometer (DT)  all enable better understanding and detection of distress, especially for research studies. They are also useful as a guide in the clinical setting. We particularly like Del-B for exploring the presence of specific features that might be causing distress during an episode of delirium for both patient and families, and the DEQ is a useful prompt to explore levels of distress as delirium resolves.
- Explain and reassure
We must provide information and education (including written material) for patients and relatives about the nature of delirium during and after the event. Regular reassurance, reorientation, and proactively asking questions regarding perceptual disturbances and other symptoms of delirium, such as nightmares, are useful inroads. Insight into what the patient is experiencing can help staff and relatives to understand patient behaviour and gives opportunities for reducing anxiety and distress. Involving relatives in these interventions is key as they are most familiar to the patient.
Patients have reported the importance of knowing that unreal experiences are common and having knowledge about events and plans for their ongoing care helped them to feel safe and reassured . Families report lack of awareness about delirium and misunderstand the rapid changes in patients’ behaviours and cognition, thinking their relative has “a new dementia” as they try to make sense of the presentation.
Explanation and reassurance are also important for professional staff. Nurses identify common themes contributing to their levels of stress as the unpredictability of delirium, patients keeping a distance and being suspicious of nurses, issues of safety, not understanding the patients’ experience and communication difficulties .
- Know the patient’s context
Appropriate support and patient-centred care can start with relatives completing a ‘This is me’ leaflet . This gives a snapshot of the person experiencing delirium so we can learn about the person’s habits, background, likes and dislikes. This can help with communication, identifying stressors, and understanding behaviour.
Overwhelmingly, medications do not have a role in managing delirium distress. However, there may be cases where patients experiencing intractable hallucinations and delusions may require a low dose antipsychotic for a limited period. In such situations, it is not sufficient to simply wait for the delirium to recover because we may miss a window of opportunity for rehabilitation and any adverse risk from antipsychotic use must be considered and documented.
Delirium is a highly distressing experience for patients, relatives and staff caring for them. Timely recognition and treatment of delirium, along with a better understanding of the experience of delirium will help us to respond with more effective support reducing suffering and distress for all involved.
1. Shenkin SD, Fox C, Godfrey M, Siddiqi N, Goodacre S, Young J, Anand A, Gray A, Hanley J, MacRaild A, Steven J, Black PL, Tieges Z, Boyd J, Stephen J, Weir CJ, MacLullich AMJ. Delirium detection in older acute medical inpatients: a multicentre prospective comparative diagnostic test accuracy study of the 4AT and the Confusion Assessment Method. BMC Med. 2019 Jul 24;17(1):138. https://www.the4at.com/.
2. Dixon M, Assessment and management of older patients with delirium in acute settings. Nursing Older People. 2018:30:35-42
3. Grover S, Ghosh A, Ghormode D. Experience in delirium: Is it distressing? The Journal of Neuropsychiatry and Clinical Neurosciences 2014
4. Sörensen Duppils G, Winblad K. Patients’ experiences of being delirious. JCN 2007:16:5: 810-818
5. Williams S, Dhesi J, Partirdge J, Distress in delirium: causes, assessment and management. European geriatric medicine 2020:11:63-70
6. Racine A, D’Aquila M, Schmitt EM, et al. Delirium Burden in Patients and Family Caregivers: Development and Testing of New Instruments. Gerontologist 2018
7. Breitbart W, Gibson C, Tremblay A. 2002. The delirium experience: delirium recall and delirium-related distress in hospitalized patients with cancer, their spouses/ caregivers, and their nurses. Psychosomatics 43: 183–194.
8. NCCN.org. (2019) National Comprehensive Cancer Network Clinical Practice Guidelines in Oncology (NCCN Guidelines): Distress Management [Internet]. Version 3.
9. Granberg A, Bergbom Engberg I, Lundberg D. Patients' experience of being critically ill or severely injured and cared for in an intensive care unit in relation to the ICU syndrome. Part I. Intensive Crit Care Nurs 1998:14:294-307.
10. Partridge J, Martin F, et al, 2013. The delirium experience: what is the effect on patients, relatives and staff and what can be done to modify this? International Journal of Geriatric Psychiatry 28: 804–812
11. Alzheimer’s Society (2017) This is Me.