Page 1: Delirium – what is it? A dementia carers’ survey

Please read the following information about the study. If you are happy with this, please continue to the survey

Information sheet

Who is this survey for and what do we want to know?

This survey is for people who care for or have previously cared for a relative or friend with dementia. We want to find out if carers know what delirium is and if they are able to identify it in the person they care/cared for.

What is delirium?

Delirium is a sudden change in a person’s mental state. It can be caused by infections, pain, dehydration and other issues. It can come on suddenly and can last for days, weeks or months. People with delirium may become confused or agitated or unusually sleepy and less responsive.

What do we want to find out?

We are interested in finding out about the experiences of relatives of people living with dementia who have also had delirium at any time. We are interested in how people noticed their relative had delirium and what, if any support they received.

What do I have to do?

You can complete the questionnaire whatever way suits you. You can do this online (it takes about 10 minutes) or we can send you a paper copy with a free post envelope. If you would prefer this please email Janet McNally (j.mcnally@bradford.ac.uk). By completing a questionnaire, you are agreeing to be part of the research project.

Please only complete this questionnaire if:

  • You live in the UK
  • You currently or have previously provided care or support for a family member or friend living with dementia

The findings will help us to identify how to best support people with dementia and their carers in coping with delirium. The project findings will be written up as reports and presented at conferences. No personal details will be used.

What are the risks and benefits?

You may find responding to questions about your experiences with delirium upsetting. If so, you can choose not to complete the questionnaire. You can also get more information about dementia and delirium from the Alzheimer’s Society website https://www.alzheimers.org.uk

Will my taking part be kept private?

All of your information will be kept confidential. Until the project is completed, we will store your completed questionnaire securely with no information that could identify you. We will not include personal details in reports based on the information you have provided.

How will my data be used and what rights do I have?

The University of Bradford is the sponsor for this study based in the United Kingdom. We will be using information from you in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. The University of Bradford will keep identifiable information about you in the form of contact details for 12 months after the study has finished.

Your rights to access change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally identifiable information possible.

You can find out more about how we use your information at: https://www.hra.nhs.uk/information-about-patients/.

The University of Bradford will collect information from you for this research study in accordance with our instructions. The University of Bradford will use your name, and contact details to contact you about the research study, and make sure that relevant information about the study is recorded, and to oversee the quality of the study. Individuals from the University of Bradford and regulatory organisations may look at your research records to check the accuracy of the research study. The only people in the University of Bradford who will have access to information that identifies you will be people who need to contact you to obtain your participation in the study and for research activities or audit the data collection process. The people who analyse the information will not be able to identify you and will not be able to find out your name, or contact details.

The Research Team

Dr. Janet McNally on (01274) 238069, email J.McNally@bradford.ac.uk.

 

Ethics

All research is looked at by an independent research ethics committee to protect your interests. This research was given a favourable opinion by The Yorkshire and Humber research ethics committee.

Complaints

If you have any complaints, please contact:

Dr. Danielle Jones on (01274) 236469, email: d.k.jones1@bradford.ac.uk or Dr. Janet McNally on (01274) 238069, email J.McNally@bradford.ac.uk