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Improving hospital experiences for people affected by dementia

If you are supporting a person with dementia in hospital and getting frustrated with things moving slowly, you are not alone. We look at some of the key challenges faced by people affected by dementia in hospitals as they move towards discharge, and what can be done about them.

This article was first published in 2019. Be sure to read our guidance on hospital visits during coronavirus.

On average, people with dementia stay in hospital around four times longer following a fall than those without dementia. This isn’t acceptable, so Alzheimer’s Society’s Innovation team is doing something about it.

We’ve heard about excellent initiatives going on to prevent people with dementia staying in hospital longer than necessary. Unfortunately, we’ve also heard many stories of where things could have been better. 

But where there are challenges, there are also opportunities. 

That’s why we’re working with people with personal experience of hospital admissions, as well as health and social care professionals, to find new ways to prevent people with dementia from being kept in hospital longer than necessary.

What are the challenges for people with dementia in hospitals?

1. Communication breakdown

Time and time again we heard how a breakdown of communication in hospital can slow things down. This can be because of the ways information is passed between someone living with dementia, those who support them, and health and social care professionals.

People told us they didn’t always feel confident asking for the information they needed. Wards are busy places, and it can be difficult to find the right person to speak to. 

What people told us:

  • 'I don’t know what I needed, but I didn’t get it.' (Person living with dementia)
  • 'It can be easier to get a CT scan than reach the family and get a good history.' (Consultant)
  • 'I don’t think either doctor was wrong, but who was most right?' (Family member)

What can help?

Preparing questions for health and social care professionals in advance and having a named person to speak to can take away some of the stress.

2. Access to care services

While we know there is a shortage of community care services, where they do exist there are other issues, which can prevent people accessing them following a stay in hospital. 

Poor access can stem from a lack of knowledge of the available options, or a misunderstanding of the support that might be appropriate for people living with dementia.

Additionally, there are assumptions that people with dementia need to go into a care or nursing home in cases where simple adaptations could allow them to stay in their own home. 

What people told us:

  • 'They wouldn’t offer him rehab after his stroke. They said, 'we don’t set targets with Alzheimer’s.’' (Family member)
  • 'The night-sitting service isn’t appropriate for people with dementia. They come twice a night, it’s confusing.' (Physiotherapist)

What can help? 

Do your research well in advance of leaving hospital, so you can make an informed decision on the support you’ll need.

Our dementia advisers are here for you.

3. Avoidable delays and late discharge

There can be practical delays on the day of discharge from hospital with forms, medication and transport.

Both people with lived experience and professionals told us of times when things had not gone smoothly on the day of discharge from hospital. These included long waits for everything that needs to be put in place. For example, a person with dementia was fit for discharge at 5pm on Friday but had to stay in hospital for the weekend as there was no transport available. 

More concerning is that we heard of people with dementia being sent home late at night, without appropriate clothing, and without the support they need to settle into their environment. This can be disorienting, and sometimes leads to people being readmitted to hospital. For this reason, best practice is to prioritise people with dementia, so they get discharged before midday. 

What people told us:

  • 'It’s not a rule, but I like people to be home by 6:30pm as doctors aren’t around in the evening and it is when the care team changes over.' (Care home manager)

What can help? 

Unfortunately, much of this can be out of your control. Why not encourage your local hospital to sign up to the Dementia Friendly Hospital Charter (PDF) to improve care for people living with dementia? 

4. Inactivity

The longer someone with dementia spends in a hospital bed, the more they lose their physical strength, cognitive ability and personhood. 

Small activities can make a real difference, but all too often staff on the ward do not have the time or facilities they need to keep someone active. Often this falls to family and friends, which adds further stress to what is already a challenging time. 

What people told us:

  • 'I understand why they spiral into aggression. They’re just bored. I wish we could do more on the ward' (Nurse)
  • 'Often the reason for admission is not the reason for their decline' (Social worker)

What can help? 

Many dementia wards now sign up to John’s campaign, which advocates for carers of people with dementia to visit throughout the day to support a person if they can, however and whenever necessary. 

What we’re doing to improve hospital experiences for people affected by dementia

Alzheimer’s Society is working with Luton and Dunstable Hospital to create and test a new Hospital Journey Tracker to help reduce the amount of time that people living with dementia spend in hospital unnecessarily.

The Hospital Journey Tracker is a system that emails status updates to a patient or named patient representative to inform them of what is happening now and what is expected to happen next in a patient's care. 

We are building this innovation with people affected by dementia and health and social care professionals. We plan to test this for eight weeks in March and April 2022.

For further information, email our Innovation team at [email protected]

Find out more about the hospital journey tracker

Learn more about this exciting innovation within the Hub. This is the place for you to share your challenges and vote for the solutions that will make a difference to people affected by dementia.

Visit the Innovation Hub
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5 comments

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Maybe if someone from the innovation team would like to contact me and i will be able to thoroughly explain why i feel so strongly about this subject. i do not want any family to suffer unnecessarily during their loved ones stay in hospital. A 7 page investigation into my mother in laws stay in the nhs in nov/dec last year should be listened to and learnt from by all.

Thanks for getting in touch again, Mark.

We’re really sorry to hear about your mother-in-law’s experience.

The Innovation team ([email protected]) welcomes the opportunity to receive notes on personal experiences. But please be aware that the hospital journey tracker mentioned is already in the design and test stage. This means it’s unlikely your experience will inform the ongoing work of this particular project and you might not receive a response to your email. However, the team are hopeful that the hospital journey tracker will help people in similar situations to your mother-in-law.

In the meantime, do consider speaking with a trained dementia adviser about the hospital experience. Our Dementia Connect support line (0333 150 3456) is there for anyone affected by dementia to benefit from emotional support and dementia information. Here are the opening times, including over the Easter Bank Holiday weekend - https://www.alzheimers.org.uk/dementia-connect-support-line

Alternatively, you may wish to consider sharing your experience with our Stories team – it may help to inform future work of our Campaigns team. Look for the link to share your story under the heading ‘What can I do to help?’ - https://www.alzheimers.org.uk/get-involved/our-campaigns

We hope this is useful, Mark.

Alzheimer's Society Innovation team

Theres very little point rehashing a blog from 2019, when there was already problems way beyond your pitiful input into changing practices in hospitals. Especially if you are a dementia patient in a non dementia ward, the ramifications can be heart breaking. Nursing levels and standards set by hospitals have been changed drastically since 2020. Let alone training of staff and equipment shortages impacting on the care and safety of patients. Continuing the cycle of entering for one medical reason and coming out with another.

Hi Mark, thank you for your comment.

We completely agree that dementia care in hospitals is often lacking and this can be frustrating. Our policy and campaigns team are doing what they can to drive change behind the scenes.

This article specifically focuses on some of the stories we heard through one of our innovation projects (https://www.alzheimers.org.uk/research/our-research/dementia-innovation).

Although the project had to be paused during coronavirus, we are pleased that it has now started again with a new solution – a hospital journey tracker - being piloted with patients, which is why we wanted to share the article again with this latest information added.

It’s only a small piece of work within a big system, but we hope that it will have a positive impact for people with dementia in hospital.

We hope this helps for now.

Alzheimer's Society Innovation team

Post op cognitive dysfunction is possible after anesthesia and surgery.

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