What are the main aims of the study?
The study is interested in how technology can support people living with dementia and their families. We have created a new website called ‘CAREGIVERS-PRO’ that is full of all sorts of useful information and resources about memory problems and dementia. It will also be a way to talk to other people living with memory problems and other caregivers and to share ideas and tips.
It’s a way to get information and support as needed from people who have had similar experiences. The research team will also be putting new things on the website every day and sharing news, tips and information about local events and support groups. Overall we hope that the website will provide ongoing support to people after a diagnosis of dementia or mild cognitive impairment and help to make life easier.
What does it involve for a participant?
People who take part in the study will be split into two groups. Half of the people will carry on with life as normal and our researchers will come and visit every 6 months and ask them to complete some questionnaires about their health and wellbeing. The other half of the people in the study will be given hand-held touch screen computers (tablets) with access to the CAREGIVERS-PRO website. There will be one for the person with dementia and one for the caregiver. These people will be asked to use the website as much or as little as they like. Researchers will then visit every 6 months to ask them to complete some questionnaires about their health, wellbeing and experience of using the website. At the end of the study people can keep the tablet devices.
How long is the study for?
The study lasts for 18 months and the researchers will visit every 6 months to ask some questions. It will end on 31st December, 2018.
What do you hope the outcomes of the study will be?
We think that in the future people will expect there to be websites and online support available, particularly for those who have grown up using computers, tablets and smartphones. So we hope that we can start to learn about what these websites might need to do and how best to design and manage them.
Where is the study based?
The research is being carried out across Europe in Spain, Italy and France. Hull is the only UK site for this study, which we are really proud of. The research is being organised in Hull by the University of Hull and Humber NHS Foundation Trust.
Who can take part?
The study is for people living in Hull and The East Riding. We are looking to recruit people with dementia and a caregiver. One person needs to have a diagnosis of dementia (it doesn’t matter what type) or mild cognitive impairment. Caregivers may or may not live with the person with dementia and can be family members, neighbours or friends. There are no rules around the number of hours of support caregivers need to provide. Both need to live in their own home or sheltered housing, unfortunately this study is not looking to recruit people who live in residential care. People don’t need to have used technology or the internet before as we can help to train them up, they just need to be willing to learn!
If you would like more information about the study before making a referral contact:
Jean Hart (Dementia Research Champion)
Tel: 07845 427216