Project title:

We have been awarded some additional funding from UK Research Innovation (UKRI) to explore the experiences, quality of life and support arrangements of newly diagnosed people with dementia and their carers during the COVID-19 pandemic. This will build on the existing data we have collected from the DETERMIND study.

Aim:

This study draws on the perspectives of recently diagnosed people with dementia and their family carers to examine their experiences of living with dementia during the COVID-19 pandemic and the impact it has on quality of life, social connection and psychological well-being. It aims to compare their experiences to explore any inequalities that may exist in the care and support received during these unprecedented times.

All 204 family carers currently participating in the DETERMIND study, alongside those people with dementia who were able to provide informed consent, were approached to take part in this sub-study. A total of 113 carers and 93 people with dementia took part in the research. We collected empirical data (both pre and during the lock-down restrictions) using a range of quantitative measures to explore the impact of the pandemic on life quality and service use. We supplemented this information with 60 qualitative in-depth interviews to gain a greater insight into participants’ perceptions and experiences of the pandemic and outline the challenges and sources of support they drew upon during these times.

We are using the data to answer the following questions:

Research questions:

• How do people with a recent diagnosis of dementia and their carers perceive, experience and manage the Governmental restrictions imposed during the COVID-19 pandemic?
• How do recently diagnosed people with dementia and their carers experience and manage their care requirements if one or both have received a positive diagnosis of COVID-19?
• Does the quality of life, social connection and psychological wellbeing of recently diagnosed people with dementia and their carers during the COVID-19 pandemic vary depending on their sociodemographic backgrounds?
• Do the experiences of receiving care and support during the pandemic differ between recently diagnosed people with dementia and their carers based on their sociodemographic backgrounds?
• Does the pandemic result in additional unmet care needs for recently diagnosed people with dementia and their carers, and do these differ based on their sociodemographic backgrounds?
• How do recently diagnosed people with dementia and their carers manage and cope with any changes in the support and services they receive?
• What further support do recently diagnosed people with dementia and their carers require during the pandemic and how does this vary between their sociodemographic backgrounds?

All data has been collected and are being analysed. The first paper reporting on some of the quantitative findings has been written and in review currently. Analysis is underway on the qualitative data and the findings outlining the experiences of people with dementia during the pandemic will be available shortly. Further publications exploring both the quantitative and qualitative findings will be produced throughout 2021 and we will keep you informed on when they are available.

For any further questions please contact Ben Hicks on [email protected]

Please see attached a lay summary of our research findings to date. We have also produced a guidance document for practitioners, based on our research, that outlines support required for people with dementia and their carers during these difficult times.