Book of You
You can use the pilot Book of You app to
- Make a digital life storybook – a collection of photos, words and narrations that reflect important aspects of your life.
- Take part in a research study that will explore how and why life story books are helpful for people with dementia and their carers.
Book of You is a way to share happy memories with carers, friends and family.
This information is for those already using the pilot Book of You app. If you have any questions you can contact the lead researcher.
Taking part in the Book of You research study
Am I eligible to join the research study?
You can join the Book of You research study if you
- Are living with dementia, or are caring for a family member or friend with dementia, and
- Have access to an iPhone, iPad, iPad mini, or iPod Touch.
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What will I be asked to do if I take part in the study?
You’ll be given access to the Book of You app, which you can use to make and listen to your own digital life storybook. You’ll be able to add materials such as photos, music and narrations. We’ll suggest common life storybook themes, and you’ll be able to decide exactly what you add. You can as much material as you like to the app and you can view it as often as you wish.
During the study, we ask that you use the app at least twice a week for about 30 minutes each time to enjoy making and viewing your Book of You. The study lasts 12 weeks.
We’ll also ask you some research questions that will help us to understand more about how a Book of You may help people with dementia and their carers.
Occasionally we’ll send you notices through the app, for example to ask you to complete a survey, or remind you to use the app.
Taking part in the study doesn’t involve any lifestyle restrictions or changes. You can carry on your everyday activities as normal while participating in the study.
It won’t cost you anything to use the app and take part in the study, other than to your mobile data plan if applicable. By using the app when you have Wi-Fi rather than on your 3G/4G network you can ensure that it won’t cost you anything to use.
Why is this research being carried out?
Researchers think that keeping a life story book may improve the wellbeing of people with dementia and their carers, and their relationship. This research aims to evaluate the effects of making and using a digital life storybook.
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How much time will I need for the research study?
As well as using the app, we’ll ask you to answer some questions during the 12-week research study:
The first time you use the app we’ll
- Ask for some details from you such as your name and age
- Describe the research study and ask if you consent to taking part
- Ask you some questions about your wellbeing.
This should take no more than 20 minutes. You don’t have to finish in one sitting, you can pause and come back to this at any time. Once you’ve completed this you can start using the app.
Halfway through the project (after 6 weeks), and again at the end of the project (after 12 weeks) we’ll ask you to complete a questionnaire about how you’re feeling. This should take no more than 20 minutes each time.
For each question, we’ll give you a list of options to choose from – you won’t be asked to write any responses. If there’s anything that you don’t want to do or to answer, you don’t have to.
In total, you’ll need at least three and a half hours each month, for 3 months, to take part in the research study. This includes time spent using the app and answering research questions.
How can I get the app?
To get the Book of You app, sign up above, on this webpage, and we’ll send you an invite. We’ll ask you to install an app called TestFlight. This is a free Apple service that is used for testing apps. Once you have TestFlight you’ll be able to install Book of You. As this is a pilot version of the Book of You Life app it isn’t openly available on the App Store.
The Book of You app will work best when you have an internet connection, using either 3G/4G or Wi-Fi. Without internet, you can still make and view a life storybook, but you won’t be able to use some of the features in the app, such as the image search.
Risks and benefits
Are there any risks of taking part?
It’s up to you what materials you add to your Book Of You. Please be aware that some memories you have as a result may make you feel happy or sad.
If you experience any unpleasant feelings, remember that you can stop or take a break from using the app at any time and discuss this experience with a friend, relative or loved one.
What are the possible benefits of taking part?
If you decide to take part, we hope that this may be of some help to you. Previous research has suggested that using a digital life storybook is an enjoyable experience and may have a positive effect on wellbeing. Everyone who takes part in the study will be contributing information that may help us to better treat people with memory difficulties in the future.
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What information will you collect about me?
When you use the apps we’ll collect information about:
- How you use the apps, such as how often, what time of day and for how long
- Your answers to questionnaires, including your responses about how you’re feeling
We won’t collect any pictures or recordings you add to to your life storybook.
All information collected during the study will be kept confidential. We won’t collect or share any information that will allow you to be identified, such as your name or location, and we won’t be able to identify you or any other individuals from this data.
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How will you share my information?
The information collected will then be sent securely to Dementia Citizens researchers and project partners, who’ll look at the effects of using Book of You on the wellbeing and relationships of all participants.
Dementia Citizens researchers are academic researchers that are approved by Dementia Citizens now and in future.
We won’t be able to identify you or any other individuals from this data.
See the Dementia Citizens privacy notice for full information about data sharing.
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How will the information you collect be used?
The information collected will be used to try to improve dementia care. Findings will be published on the Dementia Citizens website, and in academic journals and shared at conferences.
Your personal information will always be kept anonymous and confidential – you won’t ever be identified in the findings.
We’ll keep data for as long as it remains useful to researchers and for no more than 7 years.
At the end of the study
What will happen at the end of the study?
The study lasts 12 weeks. After the study ends,
- You won’t be prompted to answer any further questions about your wellbeing
- You’ll stop receiving notifications to use the app or fill in questionnaires
- You should be able to continue to use the Book of You app to make and view a life story book. However, please be aware that we won’t maintain this pilot version of the app after the 12-week research study, so you may experience some bugs and problems using it.
The community interest company Book of You plans to launch an improved version of the app. We’ll email you about how to access the new app when it is ready.
How can I leave the study?
To leave the study you can just stop using the app.
You can leave the study at any time once you have joined without giving a reason. The information that has been collected up until this point will be used in the study.
What if I have a complaint?
If you’re unhappy about any aspect of your involvement in the study, please tell us, and we’ll try to resolve any concerns. Any complaint about the way you have been dealt with during the study or any possible harm you might have suffered will be fully addressed.
Please address your complaint to the Manager of the Bangor University School of Healthcare Sciences:
Dr Huw Roberts, Fron Heulog, Bangor University, Bangor LL57 2EF
Tel: 01248 383136
About the researchers and Book of You
Who is carrying out the study?
This study is being carried out by Laura O’Philbin and Professor Bob Woods from Bangor University’s Dementia Services Development Centre (DSDC). DSDC Wales is known internationally for its high quality research developing and evaluating creative psychosocial interventions for people with dementia and their carers.
All research in Bangor University is looked at by an independent group of people, called a Research Ethics Committee, to protect your interests. This study has been reviewed and approved by the Bangor University Ethics Committee.
Who do I contact if I have a question about the study?
If you need help or have a question about taking part in this study please contact the lead researcher, Laura O’Philbin, on 01248 383188 or firstname.lastname@example.org.
What is Book of You?
Book of You is a community interest company which aims to help people with dementia through life story work. You can find out more on the Book of You website.