Clarissa Giebel1,2, Kerry Hanna3, Hilary Tetlow4, Kym Ward5, Justine Shenton6, Jacqueline Cannon7,8, Sarah Butchard9, Aravind Komuravelli10, Anna Gaughan11, Ruth Eley12, Carol Rogers13, Manoj Rajagopal14, Stan Limbert15, Steve Callaghan16, Rosie Whittington17, Lisa Shaw18, Mark Gabbay3,15. 1. Department of Primary Care & Mental Health, University of Liverpool, Liverpool, UK. clarissa.giebel@liverpool.ac.uk. 2. NIHR ARC NWC, Liverpool, UK. clarissa.giebel@liverpool.ac.uk. 3. Department of Primary Care & Mental Health, University of Liverpool, Liverpool, UK. 4. SURF Liverpool, Liverpool, UK. 5. The Brain Charity, Liverpool, UK. 6. Sefton Older People's Forum, Liverpool, UK. 7. Wigan Dementia Action Alliance, Wigan, UK. 8. Lewy Body Society, Wigan, UK. 9. Mersey Care NHS Trust, Liverpool, UK. 10. North West Boroughs NHS Trust, Liverpool, UK. 11. Together in Dementia Everyday (TIDE), Liverpool, UK. 12. Liverpool Dementia Action Alliance, Liverpool, UK. 13. House of Memories, Liverpool, UK. 14. Lancashire & South Cumbria NHS Trust, Lancaster, UK. 15. NIHR ARC NWC, Liverpool, UK. 16. EQE Health, Liverpool, UK. 17. Me2U Daycare, Liverpool, UK. 18. Department of Modern Languages and Cultures, University of Liverpool, Liverpool, UK.
Abstract
BACKGROUND: Social support services such as day care centres are important in post-diagnostic dementia care to enable people living with dementia stay at home for longer. Little research has addressed potential inequalities in access, with no research on variations before and since COVID-19. The aim of this study was to explore inequalities in social support service usage before and since the pandemic. METHODS: Unpaid carers and people living with dementia were interviewed over the phone about their experiences of accessing social support services before and since the COVID-19 pandemic. Transcripts were analysed for key themes using inductive and deductive thematic analysis. RESULTS: Fifty participants (42 unpaid carers; eight people living with dementia) were interviewed, and five themes identified: (1) Service issues; (2) Access issues; (3) Relying on own initiative; (4) New inequalities due to COVID-19; and (5) Missing out on the benefits of support services. Participants reported transport, finances, and location as factors reducing their ability to access support service pre-COVID, with inequalities remaining and at times exacerbated since. Carers and people living with dementia also reported struggling with accessing basic necessities during COVID, including food and medicines. CONCLUSIONS: Considering the benefits of accessing support services, resourced procedures and facilities are needed to maintain access to support services with more accessible remote support provision, enabling people from all backgrounds to access the care they need.
BACKGROUND: Social support services such as day care centres are important in post-diagnostic dementia care to enable people living with dementia stay at home for longer. Little research has addressed potential inequalities in access, with no research on variations before and since COVID-19. The aim of this study was to explore inequalities in social support service usage before and since the pandemic. METHODS: Unpaid carers and people living with dementia were interviewed over the phone about their experiences of accessing social support services before and since the COVID-19 pandemic. Transcripts were analysed for key themes using inductive and deductive thematic analysis. RESULTS: Fifty participants (42 unpaid carers; eight people living with dementia) were interviewed, and five themes identified: (1) Service issues; (2) Access issues; (3) Relying on own initiative; (4) New inequalities due to COVID-19; and (5) Missing out on the benefits of support services. Participants reported transport, finances, and location as factors reducing their ability to access support service pre-COVID, with inequalities remaining and at times exacerbated since. Carers and people living with dementia also reported struggling with accessing basic necessities during COVID, including food and medicines. CONCLUSIONS: Considering the benefits of accessing support services, resourced procedures and facilities are needed to maintain access to support services with more accessible remote support provision, enabling people from all backgrounds to access the care they need.
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