Background: Meeting the needs of relatives when a family member is dying can help facilitate better psychological adjustment in their grief. However, end of life experiences for families are likely to have been deleteriously impacted by the COVID-19 crisis. Understanding how families’ needs can be met during a global pandemic will have current/future relevance for clinical practice and policy. Aim: To explore relatives’ experiences and needs when a family member was dying during the COVID-19 pandemic. Design: Interpretative qualitative study using semi-structured interviews. Data were analysed thematically. Setting/participants: A total of 19 relatives whose family member died during the COVID-19 pandemic in the United Kingdom. Results: In the absence of direct physical contact, it was important for families to have a clear understanding of their family member’s condition and declining health, stay connected with them in the final weeks/days of life and have the opportunity for a final contact before they died. Health and social care professionals were instrumental to providing these aspects of care, but faced practical challenges in achieving these. Results are presented within three themes: (1) entering into the final weeks and days of life during a pandemic, (2) navigating the final weeks of life during a pandemic and (3) the importance of ‘saying goodbye’ in a pandemic. Conclusions: Health and social care professionals can have an important role in mitigating the absence of relatives’ visits at end of life during a pandemic. Strategies include prioritising virtual connectedness and creating alternative opportunities for relatives to ‘say goodbye’.

Much is known about the factors making caring for a spouse with dementia burdensome. However, relatively little is known about factors that help some spouses become resilient. We define resilience as 'the process of negotiating, managing and adapting to significant sources of stress or trauma'. We aimed to assess whether spousal dementia carers can achieve resilience and to highlight which assets and resources they draw on to facilitate or hinder resilience, using an ecological framework . Twenty in-depth qualitative interviews with spousal carers from two carer support groups and a care home in North West England. Eight participants were resilient and 12 were not. A resilient carer was characterised as someone who stays positive and actively maintained their relationship and loved one's former self. Resilient carers were knowledgeable and well supported by family but especially friends, with whom they shared this knowledge. They were more actively engaged with services such as respite care. There is a need to move towards more ecological models of resilience. We propose that access to assets and resources is not always sufficient to facilitate resilience. Implications of these findings are discussed.

Background: Health and social care professionals’ ability to address the needs of patients and their relatives at end of life is likely to have been impacted by the COVID-19 pandemic. Aim: To explore health and social care professionals’ experiences of providing end of life care during the COVID-19 pandemic to help inform current/future clinical practice and policy. Design: A qualitative interview study. Data were analysed using thematic analysis. Setting/participants: Sixteen health and social care professionals working across a range of clinical settings in supporting dying patients during the first wave (March–June 2020) of the COVID-19 pandemic in the United Kingdom. Results: Participants reported emotional and practical challenges to providing end of life care during the pandemic, including increases in patient numbers, reduced staffing levels and relying on virtual platforms for sensitive, emotive conversations with relatives. Participants were central to promoting connections between patients and their families at end of life and creating opportunities for a final contact before the death. However, the provision of support varied as a consequence of the pressures of the pandemic. Results are discussed under two themes: (1) challenges and facilitators to providing end of life care, and (2) support needs of relatives when a family member was dying during the COVID-19 pandemic. Conclusion: There is a need for flexible visiting arrangements at end of life during a pandemic. A systems-level approach is necessary to promote the wellbeing of health and social care professionals providing end of life care during and after a pandemic.

Objectives: Spousal dementia carers have unique support needs; they are likely to disengage from their existing social networks as they need to devote more time to caring as the disease progresses. Previously we showed that support resources can facilitate resilience in carers, but the relationship is complex and varies by relationship type. The current paper aims to explore social support as a key component of resilience to identify the availability, function and perceived functional aspects of support provided to older spousal dementia carers. Method: We conducted 23 in-depth qualitative interviews with spousal carers from two carer support groups and a care home in North West England. Results: Family and friends served a wide range of functions but were equally available to resilient and non-resilient participants. Family support was perceived as unhelpful if it created feelings of over-dependence. Participants were less likely to resist involvement of grandchildren due to their relatively narrow and low-level support functions. Friend support was perceived as most helpful when it derived from those in similar circumstances. Neighbours played a functionally unique role of crisis management. These perceptions may moderate the effect of support on resilience. Conclusion: Family and friend support is not always sufficient to facilitate resilience. Support functions facilitate resilience only if they are perceived to match need. Implications of these findings are discussed.

COVID-19 public health restrictions have affected end-of-life care experiences for dying patients and their families. To explore bereaved relatives’ experiences of quality of care and family support provided during the last days of life; to identify the impact of factors associated with perceived support. A national, observational, open online survey was developed and disseminated via social media, public fora and professional networks (June–September 2020). Validated instruments and purposively designed questions assessed experiences. Analysis used descriptive statistics, logistic regression and thematic analysis of free-text responses. Individuals (⩾18 years) who had experienced the death of a relative/friend (all care settings) within the United Kingdome during the COVID-19 pandemic. Respondents (n = 278, mean 53.4 years) tended to be female (n = 216, 78%); over half were ‘son/daughter’ (174, 62.6%) to the deceased. Deceased individuals (mean 81.6 years) most frequently died in their ‘usual place of care’ (n = 192, 69.3%). Analysis established five conceptual themes affecting individualised care: (1) public health restrictions compounding the distress of ‘not knowing’; (2) disparate views about support from doctors and nurses; (3) challenges in communication and level of preparedness for the death; (4) delivery of compassionate care; (5) emotional needs and potential impact on grief. Male respondents (OR 2.9, p = 0.03) and those able to visit (OR 2.2, p = 0.04) were independently associated with good perceptions of family support. Despite public health restrictions, individualised care can be enabled by proactive, informative communication; recognising dying in a timely manner and facilitating the ability to be present before death.

Objectives: Little research examines trajectories of carer resilience or the factors that facilitate or hinder resilience over time. We use qualitative longitudinal methods to examine trajectories of resilience and which assets and resources are associated with resilience and care status transitions in spousal dementia carers. Method: Based on an original sample of 23 spousal dementia carers (Donnellan, Bennett, & Soulsby, 2015 Donnellan, W. J. , Bennett, K. M. , & Soulsby, L. K . (2015). What are the factors that facilitate or hinder resilience in older spousal dementia carers? A qualitative study. Aging & Mental Health, 19, 932–939. [Taylor & Francis Online], [Web of Science ®] [Google Scholar] ), we conducted 13 follow-up interviews, including: 5 continuing home carers, 3 former carers (institutionalised), and 5 former carers (widowed). Results: Five participants remained resilient (stable resilient), three remained non-resilient (stable non-resilient) and four participants became resilient (non-resilient to resilient). Only one participant became non-resilient (resilient to non-resilient). Stable resilience was characterised by continuing individual assets and community resources. Carers who became resilient returned to previous resources, or gained new resources. Conclusion: Institutionalisation and widowhood are not always barriers to resilience; spousal dementia carers can remain or even become resilient over time despite deteriorating health, institutionalisation, or death of the care recipient.