Learning From Experience: Running the EMBED-Care Cohort Study With People With Dementia and Their Carers During the COVID-19 Pandemic

Background/aims: The Empowering Better End of Life Care (EMBEDCare) Programme aims to deliver a step-change in caring for people living with dementia towards end of life. A key workstream is a large cohort study collecting data not available elsewhere. This aims to provide an in-depth understanding and new insights into the palliative care needs of people with dementia in their last 1-2 years of life and of family carers. Here, we discuss our recruitment and retention to better understand the cohort study experience during COVID-19. Methods: This longitudinal mixed method cohort intends to recruit 294 people living with dementia and family carers via acute hospitals in England. After baseline data collection occurs every two months for up to twelve months. Results: During the first nine months of recruitment, participating hospitals consented one-third to one-half of those eligible to participate. To date, of those consented 52% completed baseline, 17% have completed the first follow up and 7% the third follow-up. We consider the practical and methodological challenges encountered in opening, recruiting, running and retaining participants in a large cohort study during COVID-19. Then we reflect on our agile approach to adapt and adjust our practices as the pandemic continues and new challenges arise. We outline our attempts to ensure inclusive research practices and the practical issues in moving from face to face to remote data collection. Conclusions: Adapting the study, which was designed pre-COVID-19, enabled the EMBED-Care cohort study to open. We reflect on our decisions and consider whether an earlier radical re-think rather than an agile approach in the context of COVID-19 restrictions may have reaped greater success. We conclude by looking ahead as to how these experiences may influence post-pandemic research practices when working with vulnerable populations.

Let it out (LIO): A mixed-methods study to optimise the design of an online, emotional disclosure intervention for adults with terminal illness receiving hospice care

Background: The COVID-19 pandemic has accelerated adoption of remote ways of providing hospice care, including psychological support. Emotional disclosure (ED) interventions hold potential as a way of providing such support online. But evidence supporting use of ED interventions for people living with terminal illness is limited. We are testing an online psychological intervention, Let It Out (LIO), consisting of three self-guided expression sessions over two weeks. Aims: The primary aim is to inform the development of LIO. Secondary aims include assessing LIO's acceptability, feasibility of study methods and potential impact on wellbeing. Methods: A mixed-methods, longitudinal study. Adults receiving palliative care were recruited from six UK hospices from September 2020 to January 2021. Participants received the LIO intervention, and completed physical and psychological health-related questionnaires at baseline and immediately, one week, four weeks and eight weeks after the final expression session, with a feedback form after the final session. Two also took part in a semi-structured interview. Focus groups and interviews have also been held with 12 hospice staff and volunteers. Data have been triangulated through process evaluation. Results: Of 13 patients recruited, 8 have completed all three expression sessions. Most people who finish LIO find it helpful (7/8). One person who withdrew found the online platform too complicated to use. Staff felt LIO could be helpful for computer-literate patients, but reported difficulties with recruitment. Conclusion: Preliminary evidence suggests LIO holds potential to support wellbeing for some people living with terminal illness. Adaptions are required to make the online platform more user-friendly. This study demonstrates the value of robust consultation with patients and staff in the development of acceptable online interventions for use in palliative care.

Trust in older black, Asian and minority ethics persons with dementia and caregivers: The effects of COVID-19

Introduction: Members of Black, Asian and minority ethnic (BAME) communities in the UK have faced significant burden due to COVID-19. This population has had higher incidence rates of COVID-19, and also higher death rates. The pandemic has also disproportionately affected older adults, including those with dementia and as a result their caregivers. This study aims to explore culturally specific experiences of trust surrounding government policies, guidelines and services in BAME populations in the UK. Methods: Semi-structured interviews with 11 caregivers and 7 older adults with dementia were performed as part of a wider study on BAME experiences under COVID-19. Participants were recruited from national registries, such as Join Dementia Research, social media and word-ofmouth. Data was then analysed using thematic analysis methods with a specific focus on experiences around trust in guidelines, services and policy. Results: The concept of trust featured heavily in respondent interviews. Trust was seen as both a personal and a wider community issue. When stratified by ethnicity (within BAME communities) and other demographic factors, differences in level of trust and perception of guidelines and policies were found between groups - such as how much trust was put into government messaging. Conclusions: This paper looks at groups highly vulnerable to COVID-19 and their experiences of health and social policy. It is clear that attention must be paid to differences between different groups' cultural norms and structures in formulating and providing health and social care interventions. A move away from 'one-size-fits-all' policies may improve both the experience of health and social care interventions and promote feelings of inclusion and trust towards providers.

Rapid review of decision-making for place of care and death in older people: Lessons for COVID-19

IntroductionThe coronavirus pandemic (COVID-19) has affected the functioning and capacity of healthcare systems worldwide. COVID-19 has also disproportionately affected older adults, including those living with dementia. In the context of COVID-19, decision-making surrounding place of care and place of death in this population involves significant new challenges.ObjectivesTo explore key factors that influence place of care and place of death decisions in older adults. A secondary aim was to investigate key factors that influence the process and outcome of these decisions in older adults. To apply findings from current evidence to the context of COVID-19.MethodsRapid review of reviews, undertaken using WHO guidance for rapid reviews. Ten papers were included for full data extraction. These papers were published between 2005-2020. Data extracted was synthesised using narrative synthesis, with thematic analysis and tabulation.ResultsPapers included discussed actual place of death, as well as preferred. Results were divided into papers that explored the process of decision-making, and those that explored decision-making outcomes. Factors such as caregiver capacity, the availability of multidisciplinary teams, cultural appropriateness of care packages and advanced care planning were found to be key.ConclusionsThe process and outcomes of decision-making for older people are affected by many factors – all of which have the potential to influence both patients and caregivers experience of illness and dying. Within the context of COVID-19, such decisions may have to be made rapidly and be reflexive to changing needs of systems and of families and patients.

Rapid development of a decision-aid for people with dementia and their families during COVID-19

IntroductionCOVID-19 as a pandemic has disproportionately affected older adults, including those with dementia. The effects on health and social care systems has necessitated a rapid-response approach to care planning and decision-making in this population, with reflexivity and responsiveness to changing individual and system needs at its core. In light of this, a decision-making tool to help families of persons with dementia was developed using a combination of qualitative data and evidence synthesis.ObjectivesTo develop a decision-aid using a combination of assessment and evidence-gathering methods for families of persons with dementia.MethodsSemi-structured interviews with helpline staff from national end-of-life and supportive care organisations formed the basis of the tool design. Co-design with people living with dementia, current and former carers and experts in general practice and social care shaped the next stage. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken.ResultsOutput from interviews covered many topics, including trust, agency and confusion in making decisions in the context of COVID-19. The rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision-making.ConclusionsCombining different sources and forms of evidence was efficient and valuable in creating a novel decision-making tool for persons with dementia and their families within the context of COVID-19. The decision-aid covered care planning, caregiver support systems, access to information and contingency considerations. Upon publication, the tool was adopted by NHS England and other leading healthcare organisations.DisclosureNo significant relationships.

Carer perspectives of trust and authority during COVID-19

The COVID-19 global pandemic has had a significant impact in the way services are accessed and perceived by patients and their carers. Trust in services has shifted, and relationships with healthcare professionals have been affected, with carers now seeking alternative and more accessible sources of support. The aim of this paper is to explore the challenges and concerns including issues around trust that carers of people living with dementia and terminal illness have brought to support helplines, the decisions they are having to make, and the impact that the pandemic has had on end of life care. Eight helpline support workers were recruited from the Dementia UK and Marie Curie organisations, and semi-structured qualitative interviews were conducted through video calls on Microsoft Teams. Interviews were recorded with participants' consent and transcribed and checked via the Microsoft Stream automated system. The data was analysed by means of thematic analysis on NVIVO 11. Interview data was coded according to the point of time in the pandemic;early, later, or general. It was found that issues of trust, perceived loss of agency and confusion regarding government guidelines were expressed from the beginning of the pandemic to the current day. These stemmed from situations including care within hospitals and care homes, particularly due to a lack of communication from the aforementioned about the welfare of their relatives, and choices being removed from carers about their relatives' discharge pathways. There were also concerns raised about the rapidly and constantly changing guidelines for vulnerable people during the pandemic, with carers seeking information and reassurance from charity helplines rather than authority figures and the government.

1 Carer perspectives of trust and authority during COVID-19

The COVID-19 global pandemic has had a significant impact in the way services are accessed and perceived by patients and their carers. Trust in services has shifted, and relationships with healthcare professionals have been affected, with carers now seeking alternative and more accessible sources of support. The aim of this paper is to explore the challenges and concerns including issues around trust that carers of people living with dementia and terminal illness have brought to support helplines, the decisions they are having to make, and the impact that the pandemic has had on end of life care. Eight helpline support workers were recruited from the Dementia UK and Marie Curie organisations, and semi-structured qualitative interviews were conducted through video calls on Microsoft Teams. Interviews were recorded with participants’ consent and transcribed and checked via the Microsoft Stream automated system. The data was analysed by means of thematic analysis on NVIVO 11. Interview data was coded according to the point of time in the pandemic;early, later, or general. It was found that issues of trust, perceived loss of agency and confusion regarding government guidelines were expressed from the beginning of the pandemic to the current day. These stemmed from situations including care within hospitals and care homes, particularly due to a lack of communication from the aforementioned about the welfare of their relatives, and choices being removed from carers about their relatives’ discharge pathways. There were also concerns raised about the rapidly and constantly changing guidelines for vulnerable people during the pandemic, with carers seeking information and reassurance from charity helplines rather than authority figures and the government.