You are being invited to do a survey which is part of a research study. Before you decide to do the survey, it is important that you understand why the research is being done and what it will involve. Please take the time to read the following information carefully.
Unfortunately people who live in care homes (residential care homes or nursing care homes) are not able to take part in this study.
It is important that you read the information below and answer the following questions yourself.
Why are we doing this survey?
This survey aims to find out if there is a relationship between how much people with dementia use technology and how lonely they feel.
This project is part of Dr Merryn Anderson’s Academic Clinical Fellowship; this means that she is a medical doctor who is interested in research.
Who is doing this research?
The lead researcher of this study is Dr Merryn Anderson. Dr Anderson is an Academic Clinical Fellow in the College of Medicine and Health. The project is supervised by Professor Louise Allan who is a Professor of Geriatric Medicine.
Why me?
You have been contacted about this survey as you have registered with Join Dementia Research or DEEP. You have said that you have a diagnosis of dementia. You have said that you might be interested in completing surveys about your experience of having dementia.
Ethical review of this Research
This study has been reviewed by the University of Exeter, College of Medicine & Health, Research Ethics Committee who gave permission for this research to happen. The review reference is May22/B/296.
What is involved in doing the survey?
The survey will ask questions to see if you feel lonely, to see how often you use technology at the moment and to see if you think technology is helpful to keep you in touch with other people. It also asks about if the Covid-19 pandemic has changed your use of technology to connect with other people.
The questions in this survey may be upsetting for some people. As your answers are anonymous, even if your answers indicate that you are lonely we will have no way of contacting you. However there are details of support services in the next section of this document; these are repeated at the end of the survey.
This survey is likely to take about 20 minutes to complete.
Benefits and risks of taking part
There is unlikely to be any direct benefit to you from taking part in this survey. There may be some benefit to society; but we cannot know this at the start of the research project.
The survey asks questions about loneliness which might be upsetting for some people.
There is general help and advice available about living with dementia, caring for someone with dementia and the impact of loneliness available from the following organisations. They can only offer general advice and not specific advice about this survey.
Alzheimer’s Society:
https://www.alzheimers.org.uk/categories/support/loneliness
Phone number: 0333 150 3456
Age UK:
https://www.ageuk.org.uk/information-advice/health-wellbeing/loneliness/
Phone number: 0800 678 1602
Mind:
https://www.mind.org.uk/information-support/tips-for-everyday-living/loneliness/#.Xia_gZBvLIU
Phone number: 0300 123 3393
NHS website:
https://www.nhs.uk/conditions/stress-anxiety-depression/loneliness-in-older-people/
Your GP will also be able to offer you advice and support.
Voluntary participation and your right to withdraw
Taking part in this survey is entirely voluntary, this means that you do not have to take part. When you are completing the survey your answers are not sent to us until you click ‘submit’ at the end of the survey. Up until this point you can close your browser and none of your answers will be saved. Once you have clicked ‘submit’ your answers will be sent to us. After this point we will not be able to remove your answers from the study as we will have no way of knowing which set of answers are yours.
Anonymity
The survey does not ask for your name or contact details. Your responses to this survey are therefore anonymous. There will be some questions about personal characteristics such as age, ethnicity and gender; but there will be no specific personal information that will enable your answers to be linked back to you.
Your responses to this survey are not subject to GDPR as there is no personally identifiable data.
If you no longer want Join Dementia Research or DEEP to hold your personal details, please contact them directly. However, this will not enable your answers to this survey to be changed or deleted once you have completed it.
The Data Controller for this research is the University of Exeter. You may contact the Information Governance office of the University of Exeter by emailing dataprotection@exeter.ac.uk
The Results
We hope to publish the results of this survey in academic journals, and to present the results at meetings and conferences. If you wish to be updated about the results of this study, please email m.anderson8@exeter.ac.uk
Any questions?
If you have any questions about this study, now or in the future, please email Dr Merryn Anderson at m.anderson8@exeter.ac.uk or Professor Louise Allan at L.Allan@exeter.ac.uk
Any complaints
If you have any complaints about the way in which this study has been carried out please contact Mark Tarrant, Chair of CMH REC, Email: cmhethics@exeter.ac.uk).
This question requires an answer
1. Consent form
These questions are to check that you have understood the information provided and to see if you are happy to continue with the survey.
It is important that you (the person who has dementia) read and answer these questions by yourself.
*