Clarissa Giebel, Institute of Population Health Sciences, University of Liverpool

Our qualitative interviews with carers and people with dementia have shown us just how badly the sudden withdrawal of social support service closures due to COVID19 public health measures has affected people (link: https://www.tandfonline.com/doi/full/10.1080/13607863.2020.1822292). But we also wanted to quantify these negative experiences. That’s why, in a team of academics, clinicians, third sector organisations, and people affected by dementia, we also developed a national survey (link: https://onlinelibrary.wiley.com/doi/10.1002/gps.5434) to explore: 

a) How has access to social support services been affected during the pandemic?

b) How is usage of day care centres, paid carers, and other services, or non-usage, linked to anxiety, depression, and mental well-being?

For this purpose, we developed an online and telephone survey for older adults, people with dementia, and current and former carers. We felt it was important that people could also take part over the phone, as we wanted to make sure to capture those people who might be even more isolated by not having internet access. 

Between mid April and mid May, over 660 people participated in our baseline survey, also thanks to Join Dementia Research. Of these, 569 participants had complete data. When looking at what people were accessing in a typical week before the pandemic compared to at that time point, service usage had decreased for all types of services – ranging from accessing support groups to day care centres. 

What’s more, changes in social support service usage was associated with higher levels of anxiety in people with dementia and older adults, and reduced mental well-being in unpaid carers and older adults.

The next step is to analyse our now completed longitudinal 3-time point survey, to see whether service usage has changed between April and August, and how that might be linked to mental health.