DETERMIND-Covid19 Sub-study

We were awarded additional funding from UK Research Innovation (UKRI) for a sub-study (a smaller research project to take place within the larger DETERMIND study). The DETERMIND-Covid19 sub-study explored the experiences, quality of life and support arrangements of newly diagnosed people with dementia and their carers during the COVID-19 pandemic. This built on the existing data we have collected from the DETERMIND study.

Aims:

This study collected 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. It further investigated the impact that the pandemic had on quality of life, social connection and psychological well-being. It aimed to compare their experiences and explore any inequalities that may have existed in the care and support received during the pandemic.

All 204 family carers who were participating in the DETERMIND study at the time were approached to take part in this sub-study. We also approached people with dementia who were able to provide informed consent. A total of 113 carers and 93 people with dementia took part in the sub-study. We collected data from before the lock-down restrictions and during the lock-down restrictions. We used a range of quantitative measures to explore the impact of the pandemic on life quality and service use. We added to this information with 60 qualitative in-depth interviews to gain a greater insight into participants’ perceptions and experiences of the pandemic. This also allowed us to outline the challenges and sources of support they drew upon during the pandemic.

We are using the data to answer the following questions:

Research questions:

• How did people with a recent diagnosis of dementia and their carers perceive, experience and manage the governmental restrictions imposed during the COVID-19 pandemic?

• How did 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?

• Did 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?

• Did 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?

• Did the pandemic result in additional unmet care needs for recently diagnosed people with dementia and their carers? Did these differ based on their sociodemographic backgrounds?

• How did recently diagnosed people with dementia and their carers manage and cope with any changes in the support and services they receive?

• What further support did recently diagnosed people with dementia and their carers require during the pandemic and how did this vary between their sociodemographic backgrounds?

All data has been collected and is currently being analysed. You can read some of the publications written from this data on our Publications page.

For any further questions please contact Ben Hicks: ben.hicks@nottingham.ac.uk.