Journeying through Dementia
Journeying through Dementia is a large-scale research study that aims to find out whether attending a 12-week community programme has a positive impact on the quality of life for people who are living with the early stages of dementia.
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 is a 12-week community programme focused on assisting people to self-manage their condition and continue to enjoy life following a diagnosis.
The study is funded by the National Institute for Health Research - Health Technology Assessment (14/140/80). It commenced in December 2015 and will run for three and a half years until June 2019. The award is held in partnership with Sheffield Health and Social Care Trust and takes place across ten UK sites, working in collaboration with a number of NHS trusts and Universities.
Journeying through Dementia has its origins in the Lifestyle Matters programme, which supports older people to live well, and work about self-management for people living with dementia. It was developed with feedback from people living with dementia and is based on the idea that what we do in our everyday lives is important for our general health and wellbeing.
The research will find out if attending the Journeying through Dementia community programme can support people with a diagnosis to continue living healthy, fulfilling lives. This is important because people with dementia have reported the need for greater support with learning to manage life following a diagnosis.
A series of small studies (such as this one) indicated that the Journeying through Dementia programme met the needs of, and was beneficial for, people living with early dementia. We are now looking to explore this further, in more detail, with a larger number of people.
486 people living with dementia, across ten areas in the UK, will be invited to take part in the study. The study will include people who are in the early stages of dementia and who are able to decide for themselves about involvement in the research.
This is a randomised controlled trial (RCT) whereby half of the people in the study will receive the Journeying through Dementia programme and half will not. This is to find out if those who receive the programme show any differences compared to those who do not receive the programme. Everyone in the study will continue to receive the care and treatment they would usually receive.
The Journeying through Dementia programme involves 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 can involve a supporter (usually a family member or friend) if they would like, but they do not have to.
Throughout the programme there is an emphasis on participation and putting ideas into action through activities in the local community. The content of sessions is decided by each group, with support from a trained health practitioner, so the precise content of each group varies depending on the members’ interests and goals.
Over the course of the study, everyone who participates, including those not receiving the programme and their supporters, will be visited several times by a researcher who will ask them some questions about their general health, wellbeing, and lifestyle.
People often take part in research because they want to make a difference and contribute to findings that could improve the quality of life for other people in similar situations. Those participating in research have reported this as a motivation to take part, and also as a benefit.
The participation of everyone who takes part in this study, including those not receiving the group programme, is vital to its success, and will help us to make important recommendations related to the use of this type of support programme in health service provision.
Additionally, participants who take part in the 12-week programme may benefit from added experiences including opportunities to meet new people, share ideas or concerns and develop new friendships.
Dementia patient advisory group
The study is committed to the meaningful involvement of people with dementia as advisors on the research. We are currently establishing a small advisory group of people living with dementia, and their family/friends, to act as part of the study management team.
We are looking for people who might like to give feedback and advice to the study team about various aspects of the research going forwards.
If you are living with dementia and are interested in being involved in this way, we would love to hear from you. We are also keen to involve people who support someone living with a diagnosis. To find out more, please contact:
Jessica Wright, Trial Manager
- t: 0114 222 6129
- e: email@example.com
This project was funded by the National Institute for Health Research Technology Assessment (project number 14/140/80).
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The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the Health Technology Assessment, NIHR, NHS or the Department of Health.
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