Delirium is a condition which causes a short-term confused state and develops over hours and days. It causes short term problems with memory, concentration, attention and personality. It occurs when a person is medically unwell and can be caused by several things, such as infections, pain or constipation. People living with dementia are more likely to experience delirium. People may go on to develop delirium, whether they are in hospital, in a care home or living at home.

Hearing from people with lived experience of delirium

The link here What is it like to have delirium? – BBC News takes you to a short film animation describing what it is like to have delirium after a planned procedure in hospital in 2018. Ms Gallie told her story to the BBC which was visualised by animators from Plymouth College of Art to raise awareness.

We hear from Liz and Mike, talking about their experiences of two episodes of delirium where Mike was admitted to hospital in Greater Manchester.

Filmed by Health Innovation Manchester

A delirium eBook was created following Dementia United and Oldham libraries hosting a delirium Zine workshop with people with lived experience. You can read the news story here and download the e-book 

John lives with dementia and experienced delirium during a hospital stay in 2021. John is a lived experience advisor, a Dementia United governance board member and an advisor for the Commons Select Committee for Health and Social Care.

We’ve provided John’s experience as an audio recording

and as a written excerpt Transcript of delirium – a lived experience account by John O’Doherty as well as excerpts from the interview with John and his wife Pat An interview with John O’Doherty and his wife – following his experience of delirium. 2021

John and Pat are really keen for their experiences to be shared, to enable others to learn and understand about the importance of supporting someone who is affected by delirium.

The following are quotes from staff who have heard Liz and John both speak at different events and meetings about their experiences of delirium.

It is really powerful to get a patient’s and carer’s experience of delirium (Emergency Department practitioner)

Never really considered how distressing this could be previously (Emergency Department practitioner)

Listening to John’s experience of delirium has really opened my eyes to this condition. The symptoms, we as health care professionals focus on, such as a person becoming more agitated, confused or withdrawn are a drop in the ocean compared to what the person is experiencing. It really has hit home to me the importance of recognising, diagnosing and managing this condition as a priority. (General Practitioner).

Hearing John’s account has made me far more empathetic. It could have that impact too on other health and social care professionals, in order that they then do spend a bit more time with someone with delirium. (Quality Improvement lead)

Why does identifying delirium early and treating it matter?

Where delirium is not detected and treated, people’s outcomes are much poorer. Delirium can lead to increased hospitalisation and readmission, increased likelihood of placement in a care home and can make the symptoms of dementia worse. Prevention, early detection, standardised assessment and treatment all improve these outcomes.

What did we do to start to address the issues?

Dementia United hosted three World Delirium Awareness Day events from 2018 to 2020, where we had 80 plus delegates, from across health and social care, as well as experts by experience. They all came together to start a conversation, raise awareness, share expertise as well as develop the work programme in delirium. In the first year, 62 pledges were made by delegates

“I will treat delirium as a medical emergency” (Care Home Unit Manager)

“I will build stronger communication links with relatives and community services” (Nurse Consultant)

“I will consider delirium when commissioning services” (Commissioning Manager)

Dementia United harnessed the momentum and engagement, from these events to produce a Greater Manchester approach to delirium which outlines Greater Manchester’s position on the recommendations for a person-centred pathway for those susceptible to delirium along with key standards. These key standards have been linked in to three project areas:

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