Title of study: Needs of Young People with Dementia
IRAS project ID: 244379
Name of Chief Investigator: Dr Orii McDermott, University of Nottingham
Thank you for your interest in this survey.
We would like to invite you to take part in our research study. Before you decide we would like you to understand why the research is being done and what it would involve for you. Please read this information page. If there is anything that is not clear, or if you need help with completing the survey, please contact Dr McDermott (Orii.McDermott@nottingham.ac.uk).
Note: if you are completing this survey on behalf of someone with young onset dementia, please consult your family member/friend first if he/she is happy to take part in the survey. Please provide his/her opinion (rather than your views) as much as possible, since the ultimate aim of this survey is to obtain perspectives and experiences of people living with young onset dementia.
1. Information about this survey
What is the purpose of the study?
People with Young Onset Dementia (people diagnosed with dementia before they were 65) often have different needs and preferences to older people with dementia. However, services and support appropriate for young people with dementia are not always available. In this small-scale study, we hope to find out what exactly the needs, unmet needs and preferences of young people living with dementia are. We have conducted focus groups and interviews with people with young onset dementia and their families living in Nottinghamshire (November 2018- March 2019). We are now conducting a UK-wide survey and we plan to hold a consensus meeting to discuss the study outcome (planned June/July 2019). We plan to use the insights generated from this study to develop a new research proposal to develop a self-management and peer-support programme for young people with dementia.
Why have I been invited?
You are being invited to take part because you have experiences of living with young onset dementia.
Do I have to take part?
It is up to you to decide whether or not to take part. If you do decide to take part, you will be asked to provide consent in the next page.
What will happen to me if I take part?
This is Stage 2 of a three-part study (Stage 1: interviews and focus groups, Stage 2: survey, Stage 3, consensus meeting). In this survey, you will be asked questions about your everyday activities, your experience of being diagnosed with dementia, support and help you got when you were diagnosed, support you get now, and support you would like in the future.
Some questions are quite detailed. Please provide information as much as / as little as you feel comfortable.
If you wish to take time to complete the survey, there is an option to save a survey part way through and return to it later.
After the survey After people complete the survey, the research team will analyse the information and prepare a report to feedback to the participants, researchers and the wider public. People who take part in the survey will be invited to a consensus meeting (if a participant expresses interest to attend) in Nottingham, planned in June/July 2019, where we will discuss the survey results and study findings (Stage 3 of this study). You will have opportunities to feedback your views during the consensus meeting.
Please note that we have limited places for the consensus meeting and it may not be possible to accommodate all the people who express their interest to attend. However, we will contact everyone who expressed interest to attend in early June to update and make appropriate arrangement.
Will my taking part in the study be kept confidential?
We will follow ethical and legal practice and all information about you will be handled in confidence.
If you join the study, we will use information collected from you and information about you (your name, date of birth, gender, name and year of dementia diagnosis, contact details) during the course of the research. This information will be kept strictly confidential, stored in a secure and locked office, and on a password protected database at the University of Nottingham. Under UK Data Protection laws the University is the Data Controller (legally responsible for the data security) and the Chief Investigator of this study (named above) is the Data Custodian (manages access to the data). This means we are responsible for looking after your information and using it properly. Your rights to access, change or move your information are limited as we need to manage your information in specific ways to comply with certain laws and for the research to be reliable and accurate. To safeguard your rights we will use the minimum personally – identifiable information possible.
You can find out more about how we use your information and to read our privacy notice at: https://www.nottingham.ac.uk/utilities/privacy.aspx.
The data collected for the study will be looked at and stored by authorised persons from the University of Nottingham who are organising the research. They may also be looked at by authorised people from regulatory organisations to check that the study is being carried out correctly. All will have a duty of confidentiality to you as a research participant and we will do our best to meet this duty.
Your contact information will be kept by the University of Nottingham for 18 months after the end of the study so that we are able to contact you about the findings of the study and possible follow-up studies (unless you advise us that you do not wish to be contacted). This information will be kept separately from the research data collected and only those who need to will have access to it. All other data (research data) will be kept securely for 7 years. After this time your data will be disposed of securely. During this time all precautions will be taken by all those involved to maintain your confidentiality, only members of the research team given permission by the data custodian will have access to your personal data.
In accordance with the University of Nottingham’s, the Government’s and our funders’ policies we may share our research data with researchers in other Universities and organisations, including those in other countries, for research in health and social care. Sharing research data is important to allow peer scrutiny, re-use (and therefore avoiding duplication of research) and to understand the bigger picture in particular areas of research. Data sharing in this way is usually anonymised (so that you could not be identified) but if we need to share identifiable information we will seek your consent for this and ensure it is secure. You will be made aware then if the data is to be shared with countries whose data protection laws differ to those of the UK and how we will protect your confidentiality.
What do I do if I want a paper version of this survey?
If you prefer to complete a paper version of the survey, please contact Dr Orii McDermott (Orii.McDermott@nottingham.ac.uk) / mobile 07960 415201 with your name, address, and contact number. We will post you a copy of the survey and a self-addressed envelope for you to send it back to us.
Expenses and payments
Travel expenses for attending a consensus meeting (Stage 3) will be offered. Participants will not be paid to participate in the study.
What are the possible disadvantages and risks of taking part?
We do not anticipate any disadvantages and risk of taking part in this study. All the views and perspectives you provide for this study will be anonymised and confidential personal information will not be disclosed to anyone outside of the research team. Your rights and the quality of care you receive will not be affected by taking part in, or by withdrawing from the study.
What are the possible benefits of taking part?
There may not be immediate, direct benefits of taking part in this study because the purpose is to gather information to help us to further develop services and support for people with young onset dementia. However, the information obtained from this study will directly be used for planning the next study to promote self-management and peer-support, which we hope to be beneficial for people with young onset dementia.
What happens when the research study stops?
At the end of this study, we will produce a summary report, which will be made available to all study participants and their families and friends. In addition, we will use the outcome of this study to plan a larger scale study. If you would like to receive a copy of the summary report (by post or by email), we will seek your consent to hold contact details. Similarly, if you are interested in taking part in future studies, we will ask your consent for us to keep your contact details.
What if there is a problem?
If you have a concern about any aspect of this study, you should contact Chief Investigator in the first instance (Orii.McDermott@nottingham.ac.uk). If you remain unhappy and wish to complain formally, you can do this by contacting Patient Advice and Liaison Service (phone: 0115 993 4542, email: firstname.lastname@example.org) if you are a participant from the Nottinghamshire Health NHS Foundation Trust. If you are a participantfrom the Young Dementia Network or Join Dementia Research, please contact Professor Tony Avery, Dean of the School of Medicine, University of Nottingham (phone: 0115 823 0209, email: email@example.com).
What will happen if I don’t want to carry on with the study?
Your participation is voluntary and you are free to withdraw at any time, without giving any reason, and without your legal rights being affected. If you withdraw we will no longer collect any information about you or from you but we will keep the information about you that we have already obtained as we are not allowed to tamper with study records and this information may have already been used in some analyses and may still be used in the final study analyses. To safeguard your rights, we will use the minimum personally-identifiable information possible.
What will happen to the results of the research study?
After completion of the study, we will produce a summary study report and send (either a hard copy or electronically) to study participants who provided contact details, unless you tell us you do not wish to receive the report. We plan to present the study outcome at dementia conferences and publish at least two journal articles in due course. If you would like to receive a copy of the article, please let us know.
Who is organising and funding the research?
This research is being organised by the University of Nottingham and is being funded by the Nottingham City NHS Clinical Commissioning Group NIHRResearch Capability Funding.
Who has reviewed the study?
All research in healthcare is looked at by independent group of people, called a Research Ethics Committee, to protect your interests. This study has been reviewed and given favourable opinion by North East – Newcastle & North Tyneside 2 Research Ethics Committee.
Further information and contact details
If you would like further information on this study, please contact: Dr Orii McDermott, Senior Research Fellow, Division of Psychiatry and Applied Psychology, School of Medicine, University of Nottingham, Institute of Mental Health, Triumph Road, Nottingham, NG7 2TU
Tel: 0115 823 1258 / 07876 734496 Email: Orii.McDermott@nottingham.ac.uk