Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study

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

Shortly after the nationwide lockdown came into force, we spoke to 50 unpaid carers and people living with dementia over the phone about their experiences of accessing social support services during the pandemic, and the effects this had on them.

What we found was very negative, as most people were unable to access any social support services then (in April). Those that were still accessing care were accessing paid home carers, although this brought with it their own difficulties in terms of increased risk of virus transmission. Very few people received any form of remote support and, understandably, many people with dementia were struggling with how to use digital technology, leaving many more people without access to care.

One of the main findings, even so early on in the lockdown, was that because people living with dementia were not accessing social support services anymore, and not going to their previously enjoyed support groups and day care centres any longer, they were experiencing faster deterioration. Many carers were severely concerned about whether their relative with dementia would be able to go back to those activities and services once restrictions were eased. Carers were worried that they would have progressed with their dementia too far, and that they would not be able to recognise their peers any longer. But they were also concerned about just how services were going to look like – socially distanced? Fewer people? Staff wearing Personal Protection Equipment?

Our study clearly highlights the sudden withdrawal of access to social support services in dementia, as a result of the public health measures. Considering that we are at the beginning of a second wave, services need to be supported better to provide adequate remote and/or some forms of face-to-face support during this ongoing pandemic.

To find out more:

Clarissa Giebel, Jacqueline Cannon, Kerry Hanna, Sarah Butchard, Ruth Eley, Anna Gaughan, Aravind Komuravelli, Justine Shenton, Steve Callaghan, Hilary Tetlow, Stan Limbert, Rosie Whittington, Carol Rogers, Manoj Rajagopal, Kym Ward, Lisa Shaw, Rhiannon Corcoran, Kate Bennett & Mark Gabbay (2020) Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study, Aging & Mental Health, DOI: 10.1080/13607863.2020.1822292

Giebel, C., Hanna, K., Cannon, J. et al. Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study. BMC Geriatr 20, 333 (2020).

This research was funded by the National Institute for Health Research Applied Research Collaboration North West Coast (ARC NWC).

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