Stream 2: NIDUS-family

NIDUS-family is a programme aimed at helping family carers to support people living with dementia to remain living independently at home.

COVID-19 Update

Due to the developing coronavirus risk we have changed how we are delivering NIDUS. Our NIDUS-family intervention is open for recruitment and will be delivered over the phone or via video call.

Most people with dementia want to remain living at home for as long as possible. One way this is possible is through support by family carers. However, problems with behaviour and communication can often cause family carers a great deal of stress. Increased carer stress and worries about safety often lead to the decision to move the person with dementia into a care home.

If you decide to take part there are two stages. First, a researcher will contact you to go through some questionnaires. You will also be asked to identify some areas you would like to improve. You may then be randomly allocated to receive our intervention, where you would have up to 8 sessions with a researcher over a six-month period. Whichever group you are in, your contribution is important to the research and all participants will continue to receive usual care and services. For all participants, a researcher will contact you again 6 and 12 months after the initial call to repeat the questionnaires. 

We want to see if people who receive NIDUS-family have better outcomes than people who receive usual care without NIDUS-family. If NIDUS-family helps people more than usual care alone, we hope to make it available to everyone after the study.   

Are you interested in taking part?

We are looking for family carers and their relatives with dementia to take part in NIDUS-family. For more information on whether you are eligible and what the research would involve, please read our study leaflet and participant information sheet. You can also read more about the research on this page. 

If you live in London, Bradford, Leeds, Oxfordshire, Buckinghamshire, Kent or Essex and are interested in taking part please contact our Programme Manager: Jessica Budgett on 07899 858 684, or email: j.budgett@ucl.ac.uk.

COVID-19 Update: Now we are working remotely and connecting with people via phone we can offer participation to people living in other areas of England too.

Work completed so far

During Stream 1, we reviewed existing studies, interviewed family carers, people living with dementia and professionals and carried out observations of home care staff to find out about how and why people with dementia lose independence.

Co-production workshops

Co-production workshops, with family carers, home carers, people living with dementia and researchers were held. Information gathered in Stream 1 was used with our PPI (Patient and Public Involvement) co-production group's lived and clinical experience to inform the development of the NIDUS-family. 

Pilot Study

We then tested in a small pilot study whether the NIDUS-family intervention was acceptable to people receiving it and to the researchers delivering it. We piloted the intervention with 15 family carers and their relatives with dementia and asked them for their feedback on what went well and what could be improved. We used the finding to adapt and finalise our intervention to test in a larger randomised controlled trial for which we are now recruiting.