Page 1: Information sheet

 

Participant Information Sheet and Privacy Notice

Thank you for taking the time to read this information about the survey.

In 2013 the Bristol Dementia Health Integration Team carried out a survey exploring attitudes to dementia in and around Bristol using a modified version of a scale called the Attitudes to Dementia Questionnaire (ADQ).  We now want to repeat this survey to see if attitudes to dementia have changed over the last five years. We also wish to extend the survey to collect more information about how people feel about dementia, and the level of support they might be prepared to give to a neighbour who had dementia.

Participation in this study involves your answering a series of questions separated into different sections. The first section checks that you have given your consent to take part. After this, the next section asks you for some information about your background, such as your age and gender. You will then be asked about how you might react if one of your neighbours had dementia. In the last two sections, we ask you to complete two questionnaires looking at your attitudes towards dementia and your feelings about it. Completion of the whole of the survey should take between 10 and 15 minutes. All the answers you provide will be confidential and will be anonymous.

Participation in this study is entirely voluntary, but you do need to be aged over 18 to take part.

The University of the West of England is the sponsor for this study, which is 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 the West of England will keep identifiable information about you for a year after the end of the study.

The University of the West of England will oversee the quality of the study and may audit the data collection process. The people who analyse the information that we collect about you, such as your age, gender and ethnicity, will not be able to identify you and will not be able to find out your name or contact details.

1. Why are we collecting this information? We are collecting this information to understand more about people's attitudes and feelings towards dementia. This includes comparing the results of our survey with other studies, including the survey we carried out in 2013, to see if there have been any changes to attitudes to dementia over this time. Deciding whether or not to complete the survey is entirely your choice.

2. To whom will the information will be disclosed/shared and why? The information will only be shared within the research team. The anonymised and analysed results will be disseminated through a variety of channels for example, through publication in scientific journals.

3. Where will the information be stored and how secure will it be? The data will be kept on a SharePoint site administered by the University of the West of England and to which only the research team have access. Access will be password protected.

4. How long will the information be kept for and when will it be destroyed? The data will be kept for 12 months after which it will be destroyed.

5. What rights do you have? 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 by writing to the Data Protection Officer, UWE Frenchay Campus, Coldharbour Lane, Bristol, BS16 1QY, or dataprotection@uwe.ac.uk.