Forward with dementia
Study summary and aims
This study aims to support people living with dementia and carers to live well after a dementia diagnosis and to help people in social care who are working with them. People living with dementia and their carers often have negative experiences of NHS and social care services around diagnosis. They have told us there is often little support and information; one said “When I was first diagnosed, I felt lost and so overwhelmed. I didn’t know where to turn.”
Many people living with dementia use homecare services to support them living at home. For people living with dementia without family or friends, homecare and other community services provide vital regular support and social contact. Most social care workers, especially homecare workers, often work alone, lack specific dementia training and are not confident in their roles.
We will build on a study that is providing post-diagnostic support for people living with dementia and carers through an online guide called Forward with dementia. It is an information website and personalised toolkit, that has been developed with, and for, people living with dementia and carers from a wide range of background, including underserved communities. It does not require much technical knowledge and can be used through smartphones and computer tablets. Key sections are printable. Current users are people living with dementia, carers and healthcare workers. Our study wants to expand this to social care users and include information and guides for social care practitioners, particularly people working in homecare, to help support their clients.
Join us to improve Forward with dementia
We want to be as inclusive as possible and make sure we represent many different experiences of living with dementia. We are aware that not all groups, people or communities are well represented.
If you are a person living with dementia, a family member or friend who helps care, or a social care practitioner we would like to hear from you.
There are three main ways you can help us. You can:
- Take part in a short online (Zoom or Teams) or telephone interview with our research team, and/or
- Take part in an online workshop which will help to decide what information goes on to the website and how it is presented and/or
- Help us user test the new development
Please contact us:
Please feel free to share this with anyone who you think might be interested.
Ethical approval has been given for this study by UCL ethics committee 18567/003
Connect with the project
Social media links
- Jane Wilcock, UCL – Principal Investigator
- Claudio Di Lorito, UCL – Research Fellow
- Marie Poole, University of Newcastle – Research Fellow
- Monica Leverton, King’s College London – Research Fellow
- Sarah Griffiths, UCL – PPI co-lead
- Sofia Hafeez, UCL – Administrator
- PPI Partnership group
March 2022 – May 2023
NIHR Three Schools' Dementia Research Programme
Project ID/Title: 18567/003 (UCL Research Ethics Committee)