Research on Dementia in hospital

[CJ-Research]

Hi everyone,

I am a researcher funded by the Alzheimer's society looking at ways to improve the quality and safety of care provided in hospital for people living with dementia. Previous research has shown us that visiting A&E or being admitted to hospital can be a particularly difficult time for people with dementia and the people who support them. Carers have told us in the past that they have felt they were not listened to, despite having valuable information to share with healthcare professionals.

The goal of my project is to design an intervention that can be used in A&E to improve communication between carers, healthcare staff, and patients with dementia to ensure that the right people have the right information to provide the best quality and safest care possible.

The first step in this research is to understand what is currently happening when people with dementia go into A&E or are admitted to hospital. We are gathering data on this through a survey available at https://bradford.onlinesurveys.ac.uk/dementia

We have picked one area in the UK to focus on for this first stage of research, so to participate you must be living in, or accessing care in the Hampshire area. The survey is open to anyone living with dementia in the Hampshire area , or anyone caring for or supporting someone with dementia in the Hampshire, who has been to the hospital in the last 2 years.


The survey has several multiple choice questions, and will likely take around 20 minutes to complete- you have the option of closing the survey and returning to it without losing your responses if you need to take a break.

If you would like more information about this survey, or about this research project more generally please feel free to contact me on C.J.Shaw@bradford.ac.uk

This survey has now been extended to the whole country, you can read about it >>here<<

 

[HarrietD]

Hi everyone,

Just to add that this member has been given permission to post about their research

 

[joggyb]

Hi everyone,

I am a researcher funded by the Alzheimer's society looking at ways to improve the quality and safety of care provided in hospital for people living with dementia. Previous research has shown us that visiting A&E or being admitted to hospital can be a particularly difficult time for people with dementia and the people who support them. Carers have told us in the past that they have felt they were not listened to, despite having valuable information to share with healthcare professionals.

The goal of my project is to design an intervention that can be used in A&E to improve communication between carers, healthcare staff, and patients with dementia to ensure that the right people have the right information to provide the best quality and safest care possible.

The first step in this research is to understand what is currently happening when people with dementia go into A&E or are admitted to hospital. We are gathering data on this through a survey available at https://bradford.onlinesurveys.ac.uk/dementia

We have picked one area in the UK to focus on for this first stage of research, so to participate you must be living in, or accessing care in the Hampshire area. The survey is open to anyone living with dementia in the Hampshire area , or anyone caring for or supporting someone with dementia in the Hampshire, who has been to the hospital in the last 2 years.


The survey has several multiple choice questions, and will likely take around 20 minutes to complete- you have the option of closing the survey and returning to it without losing your responses if you need to take a break.

If you would like more information about this survey, or about this research project more generally please feel free to contact me on C.J.Shaw@bradford.ac.uk

This sounds like work which is long overdue.

I look forward to reading more about your research in due course, and hope that it will be extended to other parts of the UK.

 

[nitram]

".. visiting A&E or being admitted to hospital can be a particularly difficult time for people with dementia and the people who support them..."

I don't live in the designated area and therefore cannot formally respond but never the less feel that if you combine A& E with hospitals wards you may be missing important information.

My experience, and those of others I know, is that A&E understand dementia, the problems arise when the person is admitted. They are unlikely to be admitted to a dementia ward (if one exists!), they will go into either a general ward or one decided by why they went to A&E - broken hip, chest infection, UTI. These wards may have no understanding of 'dementia'.

 

[CJ-Research]

This sounds like work which is long overdue.

I look forward to reading more about your research in due course, and hope that it will be extended to other parts of the UK.

Thank you for your feedback. I am working with a group of researchers on this project and our aspiration is to extend this survey out to cover the entire UK at some point over the next few years. I will share the results of this research on this forum when I have completed the project, and keep you all updated on the expanded project when it is launched.

 

[CJ-Research]

".. visiting A&E or being admitted to hospital can be a particularly difficult time for people with dementia and the people who support them..."

I don't live in the designated area and therefore cannot formally respond but never the less feel that if you combine A& E with hospitals wards you may be missing important information.

My experience, and those of others I know, is that A&E understand dementia, the problems arise when the person is admitted. They are unlikely to be admitted to a dementia ward (if one exists!), they will go into either a general ward or one decided by why they went to A&E - broken hip, chest infection, UTI. These wards may have no understanding of 'dementia'.

Thank you for your feedback. I am working as part of large team of researchers all focusing on various transitions in care. While my project is focused specifically on the time spent in A&E, I have a colleague who is looking at admission to hospital wards. We are working together very closely and between us, we are hoping to cover the full care pathway from community care, through hospital admission, and eventually on to discharge.

 

[Spiro]

My experience, and those of others I know, is that A&E understand dementia, the problems arise when the person is admitted. They are unlikely to be admitted to a dementia ward (if one exists!), they will go into either a general ward or one decided by why they went to A&E - broken hip, chest infection, UTI. These wards may have no understanding of 'dementia'.

Nitram raises a very important point.

Very few Care of the Elderly wards have a dementia friendly design. The legal requirement is 1 nurse and 1 HCA to care for 8 patients. When one or more of those 8 patients has dementia then the staffing levels are woefully inadequate.

 

[Spamar]

Are you looking at places such as EAUs? Could be said to be part of A&E. although I don't live in Hampshire, I found A&E OK, but EAU absolutely terrible. The ward wasn't good either.

 

[Kjn]

Hi ... Too much info for you perhaps but ...

Not in the area either but our recent experience (dad still in a hospital) for an acute hospital was pretty rubbish.
A&e did not understand that asking dad questions ..he wouldn't understand them
Admitted 8am , still there 2pm . No realisation carer mum couldn't leave him, they had no drinks, no food since evening before and dad is diabetic (in his notes).
Admittance to ward, moved within an hour to another..more confusion .
6 falls within a week and a blood test revealed he was dehydrated. A jug in a table means nothing, he doesn't know it's for him, doesn't know it's to drink and stay hydrated. This ward had posters everywhere claiming their dementia friendly approach
He was them moved to a emi ward initially for 1 day which seemed well staffed, then everyone was moved to a back corner. Hardly any daylight, nothing to do, no stimulation ... A place I can only describe as a modern asylum.

Thankfully he was moved to a cottage hospital 7weeks ago , where its a challenge for them but they are wonderful and learning from him.

Good luck with your research , these places really need tackled but also GP practices and GPs. There isn't enough information and awareness.

**climbs off soap box**

 

[CJ-Research]

Survey still open

Hi all,

I just wanted to revisit this thread to give it a quick bump up and let you know the survey is still live and looking for respondents.

We are hoping to start the second phase of this research- designing an intervention to improve the safety of A&E's and development of hospital preparedness materials to support carers in early May, but that is dependant on getting responses to the survey!

If you live in, or access hospital care in Hampshire I would be immensely grateful for your input into this project.

All the best,
Courtney
PHD Candidate
University of Bradford.

 

[CJ-Research]

Update! Survey expanded

Hi all,

I wanted to share a quick update with you all about the survey. We decided that this research is too important to limit to one region, so we have made the decision to expand the open area to anywhere in England.

That means you are now able to participate in this research if you, or a person with dementia you support, has visited ANY hospital in England in the last 2 years.

You can reach the survey by clicking this link: https://bradford.onlinesurveys.ac.uk/dementia-in-ed-survey

Participating only takes about 10 minutes and the information you share with me can be used to improve the safety and quality of care that we can provide in the emergency department for patients with dementia in the future.

I'm happy to answer any questions you may have about the survey.

There are a limited number of paper copies available if you would prefer to complete the survey on paper and send it back by post.

Best wishes!
Courtney

 

[chris53]

Survey completed

 

[CJ-Research]

Survey completed

Thank you very much! Your input is appreciated

 

[Cat27]

I've done it

 

[AlsoConfused]

Can you give us a brief survey of your findings when you've written up the research please? I'm sure I'm not the only person who'd love to see what you discovered and what you think are the best options for the future.

 

[CJ-Research]

Thank you to those who have responded!

I am going to write a short paper with a lay summary of the findings which I will share here with permission from the moderators once I have results. The work will also be shared with the Alzheimer's society to disseminate.

 

[CJ-Research]

I just wanted to give this thread a quick bump for those who haven't seen it.

This is your opportunity to participate in a short survey which will be used to improve the quality and safety of care that is provided in Accident and Emergency departments for people living with dementia.

I've had 75 responses so far, which is absolutely amazing! I need another 300 before June 1st to be able to publish my results.

If you have 10 minutes free, and you have visited any emergency department in England over the last 2 years, I would be very grateful for your input!

 

[Selinacroft]

Completed

 

[chick1962]

Completed


Sent from my iPhone using Talking Point

 

[sue38]

Done - I had missed that the survey had been extended to the whole of England.