Carers’ experiences of caring for a friend or family member with dementia during the Covid-19 pandemic

Abstract

Objectives This study aimed to explore carers’ experiences of supporting a family member or friend with dementia through COVID-19 and experiences of hope and resilience during this time. Methods Qualitative longitudinal research was undertaken in the UK, with 13 unpaid carers of people living with dementia who took part in two semi-structured interviews 8 weeks apart between June and October 2020. All transcripts were analysed using reflexive thematic analysis. Findings Four themes were developed and included: COVID-19 impacted negatively upon everyday living; carer resilience: adapting to COVID-19; analysis of risk: safeguarding the person living with dementia; and thinking about the future with COVID-19. Conclusions The results illustrated how the sudden changes which occurred during the pandemic negatively impacted on carers and people living with dementia in several ways, including additional responsibilities and taking away hope. The importance of continued formal and informal support for carers and people living with dementia during COVID-19 were highlighted. Formal services, care homes, and organisations need to be supported to implement procedures to ensure a safe environment during future lockdowns or periods of social restrictions. This will enable carers to remain visiting their family members and increase their confidence in accessing services and allowing paid carers to support their family member with dementia. These results have also illustrated the resilience of carers, who adapted to sudden changes which impacted negatively on their wellbeing and the wellbeing of the person living with dementia.

Family carers’ experiences of care home visiting restrictions during the COVID-19 pandemic: a relational autonomy perspective

“…Our findings contribute to a small international literature about family carers' experiences of care home restrictions (Hartigan et al, 2021;Nash et al, 2021;Chu et al, 2022Chu et al, , 2023Cornally et al, 2022;Giebel et al, 2022;Hanna et al, 2022;Chirico et al, 2023;Dolberg et al, 2023;Herron et al, 2023). To meet policy needs during the pandemic, these were commonly rapidly conducted and descriptive, and four papers drew upon two datasets, in the United Kingdom (UK) and Canada.…”

Designing Inclusive Qualitative Research with Carers of People Living with Dementia: Methodological Insights

“…In research for which a carer is required to arrange alternative care for participation, an incentive should be offered to aid with travel and respite care costs. It is common for research to offer vouchers to recognise participants' contributions [38,39], but this is inadequate for meeting costs for low-income participants.…”

“…Some research utilises focus groups in which the carer and PLWD are both present [39]; this removes the need for the carer to source additional care for the PLWD. However, some carers may feel uncomfortable disclosing information about their experiences in front of the person they provide care for and may focus on the PLWD's experiences instead of their own, as it is typical in their lives for the focus to be on the PLWD [38]. To avoid this issue while still including carers and those living with dementia in one group, Wammes et al [35] separated carers from those they provide care for into different focus groups.…”

“…Interviews enable an in-depth exploration of participants' experiences and allow participants to talk about issues important to them. Many interviews with carers are semi-structured [38,53,54]. These apply an interview guide in a flexible manner, allowing the interviewer to follow up on concepts raised by the participant; therefore, the interview is personalised, and the participant can frame their interview within the context of their own lives [55].…”

The Support Priorities of Older Carers of People Living with Dementia: A Nominal Group Technique Study

“…Some evidence has illustrated that well-supported carers provide better care for the person living with dementia and experience better outcomes for themselves [12,13]. Formal services, such as those provided by General Practitioners (GPs), the UK National Health Service (NHS), and social services, can provide essential support to meet the carers' needs [14,15]. However, social support, such as that provided through peer support, has often been highlighted as key for promoting subjective wellbeing [15][16][17].…”