Research Study: The Angela Project

           "Improving support for younger

            people with dementia and their 

                      families/supporters"


Welcome!

We are from University College London and the Universities of Bradford,  Northampton and Surrey. We are inviting you to take part in a research study. This research study is called the ANGELA Project and is dedicated to Angela, a lady with young onset dementia who went undiagnosed for three years before her symptoms were recognised.

This information will help you to understand what this project is about and how you might take part.

  • Part A will explain the purpose of this study and what will happen if you take part.

  • Part B will give you more information about the way the research will be carried out.

  • Part C provides contact details and what to do if you want to take part.

If you would prefer to listen to this explanation, please watch the following video:

You can also download a copy of this information here, so that you can take your time to read it before making a decision.


Part A

What is the purpose of the ANGELA Project?

  • In this project we seek to understand how to improve support for younger people with dementia and families/supporters.

  • We would like to learn more about your positive experiences of support and those of family members/supporters, during and after diagnosis.

  • We would also like to know which services you have used and a bit of information about yourself.

  • This information will be used to help others develop the forms of help and assistance needed by younger people with dementia and their families/supporters.


Why is this research needed?

  • Younger people and family members/supporters affected by dementia have special needs that are currently not met by the majority of services in the UK.
  • We are carrying out this research because of the lack of services and we need your expertise and experience to help younger people with dementia and their families/supporters.

What does taking part involve?

If you agree to take part, you will be asked to complete a questionnaire on your computer or on paper. If you would prefer, we can arrange to complete it with you over the telephone or by Skype.

If you are living with a diagnosis of young onset dementia, you may find it helpful to work together with a family member/supporter to complete the questionnaire. If you choose to complete the questionnaire by telephone or Skype, the interview will be audio-recorded.


Do I have to take part in the study?

No, you do not have to take part. If you choose to take part but then decide to stop, this will not affect the help and support you receive.


Consent

If you decide to complete the questionnaire on your computer or on paper, you will be giving your consent to take part in the research. If you opt for a telephone or Skype interview, the researcher will check that you understand what you are being asked to do and are happy to take part.


What will happen to the information I give?

All the information you give us will remain confidential. No one will be able to identify that you took part in the study.