Is it worth it? Carers' views and expectations of residential respite for people living with dementia during and beyond the COVID‐19 pandemic

Objectives The Covid‐19 pandemic has taken a heavy toll on many people living with dementia and carers. Caring for a person living with dementia at home with limited avenues for support and a break challenged many carers. Care homes in England closed to visitors, with very few offering opportunities for a short‐stay. We investigated impact of Covid‐19 on views and expectations of carers of people living with dementia about residential respite. Methods/Design Qualitative interviews with 35 carers were conducted March–December 2020: 30 women and 5 men, with ages ranging 30–83 years. Interviews explored experiences, views of residential respite, and expectations post‐Covid. Data were thematically analysed and salient concepts were drawn out and discussed within the research team and study advisers. Results Three themes were identified in transcripts, relating to impact of Covid‐19 on views and expectations of respite: (1) Carers described regularly negotiating risks and stresses of Covid, weighing up how to prevent infection and changing family arrangements to facilitate caring; (2) Carers were balancing different needs, prioritising needs of their relatives while bearing the impact of cumulative caregiving responsibilities. (3) Uncertainty about future residential respite continued, in terms of availability, ongoing restrictions and trustworthy information sources. Conclusions Residential respite is a positive, acceptable option for some carers to get a break from caring. Covid‐19 may have heighted some of caregiving stressors and there may be an increased need for a break. Views of care homes developed during the pandemic suggest that individual confidence to use respite may need to be rebuilt. Key points The Covid‐19 pandemic increased demands on carers of people living with dementia with fewer opportunities for social contact and breaks Carers described myriad ways to negotiate risks and stresses of Covid by developing ways to prevent infection and changing family arrangements. Carers also talked of balancing different needs, ways of prioritising the needs of their relatives while facing the impact of cumulative caregiving responsibilities The uncertainty about future residential respite in terms of its availability, ongoing restrictions in care homes, and which sources of information to trust was noteworthy The Covid‐19 pandemic may have heighted some demands of caregiving, and needs for a break may be greater. Individual confidence to use residential re