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

TY - JOUR

T1 - Is it worth it? Carers’ views and expectations of residential respite for people living with dementia during and beyond the COVID-19 pandemic

AU - Samsi, Kritika

AU - Cole, Laura

AU - Orellana, Katharine

AU - Manthorpe, Jill

N1 - Funding Information: This research was supported by funding from Alzheimer's Society (grant number 458, AS‐PG‐18‐029). The views expressed in this paper are those of the authors only and may not represent the views of Alzheimer's Society. We thank all participants for their time and sharing their views. Thanks also to members of our study advisory group, and Alzheimer's Society Research Network Volunteer for their contributions. We are grateful to the organisers of for their help in recruitment. Kritika Samsi, Katharine Orellana and Jill Manthorpe are supported by the National Institute for Health Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King's College Hospital NHS Foundation Trust. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. Join Dementia Research Publisher Copyright: © 2022 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.

PY - 2022/1/12

Y1 - 2022/1/12

N2 - ObjectivesThe 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/DesignQualitative interviews with 35 carers were conducted March–December 2020: 30 women and 5 men, with ages ranging 30 to 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.ResultsThree 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.ConclusionsResidential 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.

AB - ObjectivesThe 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/DesignQualitative interviews with 35 carers were conducted March–December 2020: 30 women and 5 men, with ages ranging 30 to 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.ResultsThree 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.ConclusionsResidential 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.

UR - http://www.scopus.com/inward/record.url?scp=85123660055&partnerID=8YFLogxK

U2 - 10.1002/gps.5680

DO - 10.1002/gps.5680

M3 - Article

SN - 0885-6230

VL - 37

JO - International Journal of Geriatric Psychiatry

JF - International Journal of Geriatric Psychiatry

IS - 2

ER -