Hear from Dementia United’s lived experience colleagues

Dementia United’s has co-production and collaboration with people affected by dementia and/or delirium as a cross-cutting thread across all of its projects and programme; as highlighted in NHS Greater Manchester Integrated Care’s Dementia and Brain Health Delivery Plan for 2023 to 2025 – Dementia United.

Across Dementia United we’ve been working in collaboration with lived experience advisors since 2018. For the delirium programme we created this webpage to capture lived experience accounts and to share the resources created. Health and care staff from across Greater Manchester have told us that these accounts are very powerful and that they welcome us sharing these alongside our delirium training resources as they assist them in raising awareness about the importance of improving the detection and management of delirium.

Our website analytics revealed that our delirium webpages were the top webpages visited since 2023. We’ve also seen a 103% increase in visits to the ‘hearing from people with lived experience of delirium’ webpage for the same period January to July 2025 when compared with 2024. This reflects the value of these contributions and how important it is that we share these resources.

John O’Doherty 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.

Liz Brookes is a member of the Dementia Carers Expert Reference Group. In 2020 Liz and Mike Brookes talked about their experiences of two episodes of delirium where Mike was admitted to hospital in Greater Manchester. Mike had a diagnosis of vascular dementia and Alzheimer’s Disease. Liz is a member of the Dementia Carers Expert Reference Group. You can access the film via the link here https://youtu.be/t1djSyhHyew.

We paid tribute to Mike Brookes at the end of 2025. Mike passed away very peacefully at home on 24 October, after living with Vascular Dementia since 2011. Mike will be warmly remembered as a passionate campaigner and advocate for people living with Dementia for many years along with his wife Liz, a retired nurse. He was dedicated to his work and cared deeply about his family and friends, and everyone affected by Dementia.

Over the years Mike had a few episodes of delirium. The first few episodes were the hyper-active type – but as his dementia progressed, he tended to have the hypo-active version – and this made it harder to convince some doctors that what they are looking at was, in fact, a delirium. I had exactly this scenario when Mike was admitted to A&E with acute retention of urine. The doctor was newly rotated into the department (it was August), and did not have the knowledge or experience to realise what Mike was experiencing.

To the majority of people, delirium suggests agitation, on top of confusion and high fever. But there are so many potential causes of delirium, only one of which involves an infection accompanied by a high temperature. A person with a hypo-active delirium is going to be quiet, sleepy -and as such, not present a management problem in a ward setting.

Such a patient is easy to overlook – they are not noisy, not wandering off – but also not eating and drinking, not asking for anything from busy staff. So, they can become dehydrated, malnourished – not assisted with personal hygiene and toileting. Relatives are not encouraged to advocate for their family member when they have dementia – no-one asks, What is normal for this person?

There is also a lack of understanding about quality of life for a person with dementia – and it becomes easier to decide someone is at End of Life, and for treatment to be less that positive, and less focussed on discharge to their place of residence. This can compound the condition, and a return home becomes problematic due to deconditioning. Allowing someone with dementia to lie in bed all day, rather than sitting up in a chair and mobilising leads to further complications – sepsis – and we all know where that can lead.

 

Ruth Turner is the Chair of the Dementia Carers Expert Reference Group and provides a written account of her experiences with her husband who had delirium on a number of occasions My experience of observing delirium Ruth Turner

Ann Booth is a member of the Dementia Carers Expert Reference Group and provides her account of her aunt’s hospital admission with delirium. You can access Ann’s account here Hospital admission and delirium Ann Booth

Marion Coleman is a member of the Dementia Carers Expert Reference Group and provides her account of her Mum’s hospital admission with delirium Delirium and stay in hospital Marion’s story

Other lived experience resources

Find out more the lived experience groups and how to get involved

Please feel free to contact us via email: gmhscp.dementiaunited@nhs.net