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Manchester researchers praise transformative impact of Join Dementia Research

NIHR Clinical Research Network Greater Manchester and its Join Dementia Research service has been praised for its transformative impact on the delivery of a study. 

The Care Act Easement Study has been funded by the National Institute for Health and Care Research (NIHR). It is led by Debora Price, Philip Drake, Neil Allen and Jayne Astbury, a team of researchers at the University of Manchester. 

Their project is based within the university’s Older People and Frailty Policy Research Unit (OPFPRU). It aims to understand the impact of changes in service provision brought about by the pandemic, on the experiences of older carers supporting a family member with dementia to live at home. 

The study has had two stages. The first involved semi-structured interviews with 48 older co-resident carers, and 20 Principal Social Work/Safeguarding Leads. The second involved a national survey of carers’ experiences, which received a total of 827 responses. 

The research was designed to focus on the experiences of older carers because they are likely to have been particularly impacted by the reduction and changes in available support during the pandemic, with many having faced a considerable increase in caring responsibilities.

Along with other research teams, the researchers found recruiting carers for the interviews and survey very challenging. The closures of day centres, social groups and support services, alongside the additional stresses that this group of carers were encountering, created real difficulties in reaching carers, to the extent that it threatened the progress of the project. 

However, the researchers have described how working with Clinical Research Network (CRN) Greater Manchester and, in particular, the CRN’s Join Dementia Research (JDR) service has been transformative. They describe the support as crucial to the success of the project. 

Of the 48 interviews with co-resident carers over age 70 supporting their husband, wife or partner to live at home, 36 were recruited via the JDR database. And of the 827 responses to the survey, 202 have been recruited via the JDR database. The JDR database has enabled the team to target a participant sample based on both age and geographical area. 

CRN Greater Manchester’s Direct Delivery Team has also supported the study by promoting it at various dementia carer events, recruiting 32 people to take part.   

Dr Jayne Astbury, lead researcher on the project, said “Working with JDR has been a really positive experience – they have been helpful at every step of the way, often going the extra mile for us, assisting with recruitment, adapting the database searches as our research changed and understanding the stresses that we have been under. We have felt that we have had a partner in enabling this research.”

Professor Debora Price, project Principal Investigator, said “Going forward, we would definitely plan to use JDR again as a way of connecting with people living with dementia and those who support them. It is an invaluable resource for the research community and for anyone who would like to participate in research.”

For further information about the study, please contact Dr Jayne Astbury: