Journeying Through Dementia (JTD) research study

Journeying through Dementia was a large-scale research study that aimed to find out whether attending a 12-week community programme had a positive impact on the quality of life for people who are living with the early stages of dementia.

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Study overview

The Journeying through Dementia community programme is based on research evidence and consultation with approximately 30 people living with dementia and their family members/friends. It was a 12-week community programme focused on assisting people to self-manage their condition and continue to enjoy life following a diagnosis.

The study was funded by the National Institute for Health Research - Health Technology Assessment(14/140/80). It commenced in December 2015 and ran for four years up until November 2019. The award was held in partnership with Sheffield Health and Social Care Trust and took place across thirteen UK sites, working in collaboration with a number of NHS trusts and Universities.

The research aimed to find out if attending the Journeying through Dementia community programme could support people with a diagnosis to continue living healthy, fulfilling lives.

480 people living with dementia, across thirteen areas in the UK, were invited to take part in the study. The study included people who were in the early stages of dementia and who were able to decide for themselves about involvement in the research.

This was a randomised controlled trial (RCT) whereby half of the people in the study received the Journeying through Dementia programme and half did not. This was to find out if those who received the programme showed any differences compared to those who did not receive the programme. Everyone in the study continued to receive the care and treatment they would have usually received.

The Journeying through Dementia programme involved twelve weekly group sessions with two trained health practitioners and four individual one-to-one sessions with one of those practitioners. People attending the programme could involve a supporter (usually a family member or friend) if they liked, but they did not have to.

Throughout the programme there was an emphasis on participation and putting ideas into action through activities in the local community. The content of sessions was decided by each group, with support from a trained health practitioner, so the precise content of each group varied depending on the members’ interests and goals.

Funder

The study was funded by the National Institute for Health Research - Health Technology Assessment (14/140/80)(NIHR-HTA).

Any views or opinions expressed are those of the authors and do not necessarily reflect those of the NIHR, NHS or Department of Health.

Sponsor

The study is sponsored by Sheffield Health and Social Care NHS Foundation Trust.

Privacy

Privacy policy

V2 07/11/18

JtD Privacy Policy

Sheffield Health and Social Care Foundation Trust is the sponsor for the JtD Trial and is working with The University of Sheffield in order to undertake this study. Both organisations are based in the United Kingdom. The Sheffield Health & Social Care NHS Foundation Trust and the University of Sheffield are therefore “Joint Data Controllers” under the General Data Protection Regulation (GDPR) which means they have joint overall responsibility for safely storing and using your personal data (or information) properly.

As a Clinical Trial we use personally-identifiable information to conduct research to improve health, care and services. As we are based in publicly-funded organisations, we have to ensure that it is in the public interest when we use personally-identifiable information from people who have agreed to take part in research. This means that when you agree to take part in a research study, we will use your data in the ways needed to conduct and analyse the research study. 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 personallyidentifiable information possible.

Health and care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.

The University of Sheffield, collaborating Universities and NHS Sites (study sites) will collect information from you for this research study in accordance with the Sponsor’s instructions. All sites will keep your name, date of birth, contact details and medical information including date of diagnosis (where collected) confidential and will not pass this information to the Sponsor, the Sheffield Health and Social Care Foundation Trust. Study sites will use this information as needed, to contact you about the research study, and make sure that relevant information about the study is recorded for your care, and to oversee the quality of the study. Certain individuals from Sheffield Health and Social Care Foundation Trust and regulatory organisations may look at your medical and research records to check the accuracy of the research study. Sheffield Health and Social Care Foundation Trust will only receive information without any identifying information. The people who analyse the information will not be able to identify you and will not be able to find out your name or contact details. The University of Sheffield and other study sites will keep identifiable information about you from this study for 5 years after the study has finished.

If you have any cause to complain about any aspect of the study, in the first instance please refer to the Participant Information Sheet provided for details of your local investigator. Or contact the JTD Trial Manager at: Jessica.wright@sheffield.ac.uk.

If you wish to raise a further complaint on how we have handled your personal data, you can also contact our Data Protection Officer who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).

The Data Protection Officer for the University of Sheffield is Anne Cutler and you can contact them at dataprotection@sheffield.ac.uk.

When you agree to take part in a research study, the information about your health and care may be provided to researchers running other research studies in this organisation and in other organisations. These organisations may be universities, NHS organisations or companies involved in health and care research in this country or abroad. Your information will only be used by organisations and researchers to conduct research in accordance with the UK Policy Framework for Health and Social Care Research following the preferences you chose when you signed up to the study.

Your information could be used for research in any aspect of health or care, and could be combined with information about you from other sources held by researchers, the NHS or government.

Where this information could identify you, the information will be held securely with strict arrangements about who can access the information. The information will only be used for the purpose of health and care research, or to contact you about future opportunities to participate in research. It will not be used to make decisions about future services available to you, such as insurance.

Where there is a risk that you can be identified your data will only be used in research that has been independently reviewed by an ethics committee.

Trial results films

Watch: the short (9 min) film describing the intervention, clinical trial and the results:

Watch: a longer (1hr17) made of the trial results event on 6th December 2019 in Bradford. This longer film includes more in-depth presentations from study staff and a question and answer session at the end.

Publications

Wright J, Foster A, Cooper C, Sprange K, Walters S, Berry K. Moniz-Cook E, Loban A, Young TA, Craig C, Dening T, Lee E, Beresford-Dent J, Thompson BJ, Young E, Thomas BD, Mountain G. Study protocol for a randomised controlled trial assessing the clinical and cost-effectiveness of the Journeying through Dementia (JtD) intervention compared to usual care BMJ Open 2019;9:e029207. doi: 10.1136/bmjopen-2019-029207. Available online at https://bmjopen.bmj.com/content/9/9/e029207 (last accessed 28/11/19)

Intended publications

Trial Findings paper
Implementation of Journeying through dementia in practice – lessons learned
Fidelity pape
Qualitative sub study
JtD approach to PPI involvement
Evaluating outcome measures in an RCT of a complex intervention in dementia care
Recruiting to dementia trials
Retention of people with Dementia in complex clinical trials
PPI Analysis of Qualitative research findings
Estimating the MID for DEMQoL

Conferences and events

Final Results Event, Bradford City Hall, 6th December 2019
14th UK Dementia Congress in Doncaster, 5th – Thursday 7th November, 2019, in collaboration with Experts by Experience Advisory group.
29th Alzheimer Europe Conference: The Hague, Netherlands, 23 - 25 October 2019
International Clinical Trials Methodology Conference 2019 Brighton, Mon 7th to Weds 9th October 2019
Journeying through Dementia: Lessons Learnt at South West Yorkshire NHS Foundation Trust R&D Showcase, 3rd October 2019
University of Nottingham Dementia Care Seminar Series, 10th July 2019