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‘I don’t know what I needed, but I didn’t get it’: Improving hospital experiences for people affected by dementia

Posted by Natasha Howard (Admin) 10 months ago

If you are supporting someone 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.

Hospital bed

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 researchwell in advance of leaving hospital, so you can make an informed decision on the support you’ll need. Check out the advice on our website. 

3. Avoidable delays and late discharge

There can be practical delays on the day of discharge 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 notencourage your local hospital to sign up to the Dementia Friendly Hospital Charter 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

We’re kicking off 2020 by building and testing a potential solution together with people affected by dementia and professionals. Watch this space for an update and more learning in the Spring. For further information, email innovation@alzheimers.org.uk.  

This post was edited on Jan 6, 2020 by Marie Peach

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Comments (2)

Keith O says... 8 months ago

Hi the newspapers were full of this issue on 22 Jan with headlines consistently talking about dementia patients being "dumped" in hospital wards. Radio Kent ran a 3 hour programme on it which they asked me to open and gave me the rarity of 12 minutes air time. This issue is a travesty and a terrible indictment of the problems we face with health and social care and the divide between them which creates an abyss into which many of us fall. The charter is great but needs NHS England to enforce and give it teeth.

Natasha Howard says... 8 months ago

Thanks for sharing this Keith. There was indeed a lot in the news about this, which we hope will help demonstrate how important it is to try and develop ways to overcome these challenges that people are facing. It's really great to hear that you were involved in the Radio Kent piece, so thank you to all your support on this issue. We are currently looking to build and test one of the concepts of the solutions that has come out of the project, so we will ensure to update members of The Hub on the progress of this. If you'd like to hear more about this work or any opportunities to be involved, please do contact us at innovation@alzheimers.org.uk. Thanks again, Keith, for your engagement in this area.

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