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

Abstract

Objectives

Accessing social care and social support services is key to support the well-being of people living with dementia (PLWD) and unpaid carers. COVID-19 has caused sudden closures or radical modifications of these services, and is resulting in prolonged self-isolation. The aim of this study was to explore the effects of COVID-19 related social care and support service changes and closures on the lives of PLWD and unpaid carers.

Method

PLWD and unpaid carers were interviewed via telephone in April 2020. Transcripts were analysed using thematic analysis. Demographic characteristics including household Index of Multiple Deprivation score and weekly hours of social support service usage before and since the COVID-19 outbreak were also collected. Paired samples t-tests was used to compare the mean of weekly hours of social support service usage before and since the outbreak.

Results

50 semi-structured interviews were conducted with unpaid carers (n = 42) and PLWD (n = 8). There was a significant reduction in social support service usage since the outbreak. Thematic analysis identified three overarching themes: (1) Loss of control; (2) Uncertainty; (3) Adapting and having to adapt to the new normal. Carers and PLWD were greatly affected by the sudden removal of social support services, and concerned about when services would re-open. Carers were worried about whether the person they cared for would still be able to re-join social support services.

Conclusions

PLWD and carers need to receive specific practical and psychological support during the pandemic to support their well-being, which is severely affected by public health restrictions.

Keywords:

• Dementia and cognitive disorders
• quality of life/ wellbeing
• social support
• COVID19

Acknowledgements

Without the support of those living with dementia and those unpaid carers having taking part, this study would not have been possible. We wish to thank the trainees (Kate Cotton, Mishca Hughes, Benjamin Kwapong, Rachel Elliott) and organisations which have helped recruiting and/or analysing data, and Maxine Martin and Lynn McClymont for transcribing the audio files very swiftly to analyse the data in time.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This research is supported by a grant awarded to the authors by the University of Liverpool COVID-19 Strategic Research Fund in 2020. This is also independent research funded by the National Institute for Health Research Applied Research Collaboration North West Coast (ARC NWC). The views expressed in this publication are those of the author(s) and not necessarily those of the National Institute for Health Research or the Department of Health and Social Care.