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Patients and families on delirium

In their words

25 short quotations from people who have had delirium, and from relatives who saw it happen. Each one is copied word for word from an account published by a health service, university, charity or medical journal, and links to its source.

Not knowing what it was

Patients and relatives describe not knowing what delirium was, and not being given the word.

  1. At first, I’d never heard of delirium and didn’t know what it was.

    Nicola Handley, family carer, writing about her mother The importance of being a carer, NIHR Policy Research Unit in Dementia and Neurodegeneration, Queen Mary University of London, 2025

  2. We don’t remember the word delirium being mentioned for the first couple of weeks that he was in hospital.

    The wife and daughter of a man admitted to hospital Delirium: perspectives of a patient’s wife and daughter, CMAJ (Canadian Medical Association Journal), 2023

  3. It was very distressing to see my Mum so anxious, angry and having hallucinations. I wanted to understand what was happening to her and to know how I could help.

    A relative, quoted in SIGN’s booklet on delirium Delirium: a booklet for people who have experienced delirium, and for their carers, Scottish Intercollegiate Guidelines Network (SIGN), 2020

  4. More information… because I’d never heard of delirium before. The most important thing is explaining to the partner exactly what’s going on.

    A family carer (P08), interviewed for a research study Understanding rehabilitation and support needs after an episode of delirium, BMC Geriatrics, 2025 (CC BY 4.0)

  5. Following my diagnosis I was given a huge amount of literature and advice on benefit entitlement however the subject of Delirium was not mentioned.

    He is describing the information he was given when his dementia was diagnosed, years before he had delirium after surgery. John O’Doherty, who lives with dementia Delirium: a lived experience account by John O’Doherty, Dementia United, NHS Greater Manchester, 2021

  6. I didn't know the extent or severity of delirium, or how scary it could be for the person.

    Janette Moore, whose mother had delirium after a procedure under general anaesthetic Alex went months not knowing he had delirium, University of Canberra, 2026

Not being told, not being heard

Accounts of explanations that did not come, and of concerns that were not acted on.

  1. My mum has had delirium many times, but no one ever called it that

    Nicola Handley, family carer Delirium Matters: a new report from DeNPRU-QM, NIHR Policy Research Unit in Dementia and Neurodegeneration, Queen Mary University of London, 2025

  2. Despite having had delirium, it was never spoken about in the hospital or even noted in my discharge letter.

    Mark Hudson, who had delirium in intensive care Do we know enough about delirium and how to deal with it?, Health and Social Care Alliance Scotland (the ALLIANCE), 2019

  3. I couldn’t make anybody understand. I couldn’t make my family understand. I tried to tell them, I couldn’t talk.

    An intensive care patient (patient 29), interviewed for a research study Delusions on the Intensive Care Unit: What Do Patients Think Is Going On?, PLoS One, 2016 (CC BY 4.0)

  4. It was just something the staff must see all the time so they didn’t speak to me about it, but that did me no good.

    John O’Doherty, who had delirium after major surgery An interview with John O’Doherty and his wife Pat, Dementia United, NHS Greater Manchester, 2021

  5. I think they could have explained a bit more about the condition or what was happening to him.

    Pat O’Doherty, John’s wife An interview with John O’Doherty and his wife Pat, Dementia United, NHS Greater Manchester, 2021

  6. Relatives are not encouraged to advocate for their family member when they have dementia – no-one asks, What is normal for this person?

    A family carer Hear from Dementia United’s lived experience colleagues, Dementia United, NHS Greater Manchester

Mistaken for something else

Delirium mistaken for dementia, for mental illness, or for how the person normally is.

  1. The initial diagnosis was that I had some sort of long-term mental illness – essentially, they thought that I might have schizophrenia.

    ‘Alex’ (not his real name), aged 39, who had delirium after an illness caught abroad Alex went months not knowing he had delirium, University of Canberra, 2026

  2. Mum was admitted to a ward where many of the women had dementia and assumptions were made that mum also had dementia.

    Marion Coleman, writing about her mother, who had delirium but not dementia Delirium and stay in hospital (Marion’s story), Dementia United, NHS Greater Manchester, 2026

  3. He didn’t know where he was or how he had gotten there. We were worried he’d developed dementia and would never be the same.

    A family caregiver, writing about their father Dealing with Delirium: Families Share their Stories, HealthinAging.org, American Geriatrics Society, 2014

  4. We think a lot of them assumed that, because he had a diagnosis of dementia on his file, the way he was behaving in hospital was his baseline.

    ‘Baseline’ here means how he normally was. The wife and daughter of a man with mild dementia Delirium: perspectives of a patient’s wife and daughter, CMAJ (Canadian Medical Association Journal), 2023

  5. It was just so busy. Staff were doing what they could, but delirium isn’t always recognised early enough.

    Jo Kirk, whose mother had delirium in hospital after a fall Ensuring frail older patients’ voices are heard in our research, NIHR Oxford Biomedical Research Centre, 2026

  6. I don’t want them thinking I’ve gone potty

    A patient, quoted in a hospital leaflet on delirium Delirium (patient information), Bedfordshire Hospitals NHS Foundation Trust

What it was like

Patients describe what they experienced. Relatives describe the change they saw.

  1. Hospital-induced delirium is a very scary condition because suddenly you see your relative ‘dissolve’ and it happens very quickly.

    Claire, whose father has had delirium after hospital admissions Ensuring frail older patients’ voices are heard in our research, NIHR Oxford Biomedical Research Centre, 2026

  2. It was like she became a different person

    Bonnie Sept, whose mother had delirium in intensive care Bonnie’s inspiration, University of Calgary, 2019

  3. One day, he suddenly became very quiet, had difficulty putting his thoughts into sentences and couldn’t put one foot in front of the other. We both thought he was having a stroke.

    It was not a stroke. He had an infection, and delirium. The wife and daughter of a man admitted to hospital Delirium: perspectives of a patient’s wife and daughter, CMAJ (Canadian Medical Association Journal), 2023

  4. I had delirium for approximately three weeks but during that time, I believed seven years had passed.

    Mark Hudson, who had delirium in intensive care Do we know enough about delirium and how to deal with it?, Health and Social Care Alliance Scotland (the ALLIANCE), 2019

  5. I also thought I heard the sound of other ships’ fog horns in the distance, which I now realise was the sound of other patients’ bedside call buttons.

    He believed he was on a hospital ship sailing down the River Trent. Professor Michael Wang, describing his own delirium after heart surgery “I thought I was sailing down the River Trent on a hospital ship”, Imperial College London, 2016

  6. I can remember sort of vivid people…but to me they were plasticine. They weren’t real.

    An intensive care patient (patient 23), interviewed for a research study Delusions on the Intensive Care Unit: What Do Patients Think Is Going On?, PLoS One, 2016 (CC BY 4.0)

  7. It did stress us out the first few times actually to see him. He’s very… strong both mentally and physically, and to see him like that, like a child, it is scary… and very upsetting.

    A family carer (P02), interviewed for a research study Understanding rehabilitation and support needs after an episode of delirium, BMC Geriatrics, 2025 (CC BY 4.0)

About these quotations

The quotations come from accounts published by the NHS and other health services, universities, charities and medical journals. Each one is copied word for word as published, including its spelling and punctuation. Follow the link under a quotation to read the full account.

Some quotations come from research interviews, where the people taking part are not named. Quotations from articles published under a Creative Commons licence show the licence beside the source.

The people quoted have no connection with this book and have not endorsed it. Their accounts describe the problems the book was written to help with. These include not knowing the word delirium, concerns that are not acted on, and delirium mistaken for dementia or mental illness.

Quotations checked against their sources on . Editorial responsibility: , Professor of Geriatric Medicine at the University of Edinburgh. To report an error, email alasdair@the4at.com.