Interim findings from research, funded by NIHR Applied Research Collaboration Kent, Surrey and Sussex (ARC), looking at how COVID-19 lockdown has affected the quality of life for people living with dementia and their carers have been published to help inform services as they respond to the ongoing situation.
The research found that the impact of COVID has been particularly impactful on carers living with someone with dementia, and lockdown had a negative association with the carer’s quality of life.
Female carers also reported a lower quality of life and reduced social functioning in the person with dementia, when compared to their male counterparts.
Researchers worked with 248 Kent, Surrey and Sussex families, who were already participating in a ‘Time for Dementia’ study. The families completed quality of life questionnaires, and 12 carers were also interviewed in the first part of this project.
Reduced support
The research was led by Dr Stephanie Daley, Senior Lecturer in Older People’s Mental Health and Education, Brighton and Sussex Medical School, who said:
“During the first few months of COVID-19 and its associated restrictions, there was an inevitable reduction in dementia support services available to people with dementia and their carers due to lockdown.
“Carers reported having a lack of freedom, and a loss of control. They stated that they were not able to have a break, and were unable to meet their own needs, as well as the needs of the person with dementia.
“Changes in emotional wellbeing, such as anger, sadness and exhaustion were also discussed. Carers reported COVID having an impact on the person with dementia, mainly a lack of understanding of the current pandemic or need for restrictions and a lack of stimulation. Some carers reported a noticeable acceleration in cognitive decline of the person with dementia.’’
Kath Sykes, Ageing Well and Living Well with Dementia Implementation Lead for the NIHR Applied Research Collaboration KSS (based at KSS AHSN), said:
“As COVID continues, reduced services and additional pressure on people living with dementia and their carers remains a real concern.
“Informal carers provide incredible and vital care, but they need support to do that in ‘normal times’ and a lot of this has been taken away as the impact of COVID continues.
“These interim findings have been shared across the region to highlight the needs of this group during COVID, inform services’ ongoing response to the pandemic, and also help shape dementia carer strategies now and for the future. We will share the full findings to inform services when they are available.”
Findings in more detail
In a short film, Dr Stephanie Daley discusses this study and its findings in more detail. It features interviews and members of Sussex Partnership NHS Foundation Trust’s Dementia Lived Experience Advisory Panel who describe their involvement in this study, their experience of COVID while living with someone with dementia, and how this study’s interim findings resonate with their experience.
The full findings, including a second round of assessments and interviews, are being analysed now and will be reported in the next few weeks.
The research was funded by the NIHR Applied Research Collaboration KSS and undertaken by the Time for Dementia research team at Brighton and Sussex Medical School.
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