Connecting in place: older adults' experience of online mindfulness therapy during the COVID-19 pandemic.

BACKGROUND: the negative consequences of COVID-19 distancing measures on older adults' mental health and ability to access services have been well documented. Online cognitive behavioural therapy and mindfulness interventions for older adults, carried out during the COVID-19 pandemic, have shown that these interventions are feasible and have potential mental health benefits. However, little research has been carried out on older adults' experiences of engaging with online psychological therapy, and specifically mindfulness therapy. OBJECTIVES: to understand the experience of older adults engaging with online mindfulness therapy during the COVID-19 pandemic. STUDY DESIGN: a qualitative analysis of four community-based focus groups. PARTICIPANTS: thirty-six community dwelling older adults aged between 65 and 85 years were recruited via older adult organisations, charities and the local press. Nineteen percent had long-term physical health conditions, 25% had severe and enduring mental health difficulties and 19% had mild to moderate mental health difficulties. RESULTS: there was a strong sense of group cohesion and community from the participants.Three main themes were identified: reasons for applying, experience of the mindfulness therapy and connecting at home. CONCLUSIONS: the majority of participants were positive about attending a mindfulness group online. This extended to the perceived psychological and social benefits as well as practical considerations. While some participants noted technological hurdles at the beginning of the course, the findings challenge previous studies that suggest older adults are reluctant to engage in online psychological therapies and has important implications for the future provision of psychological therapies to this population.

Rapid development of a COVID-19 care planning decision-aid for family carers of people living with dementia.

INTRODUCTION: COVID-19 has disproportionately affected people living with dementia and their carers. Its effects on health and social care systems 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. Considering this, a decision-aid to help families of persons with dementia was developed. OBJECTIVES: To coproduce with people living with dementia, and the people who care for them, a decision-aid for family carers of people living with dementia, to support decisions during the COVID-19 pandemic and beyond. METHODS: Semi-structured interviews were undertaken in 2020 with: (1) staff from two English national end-of-life and supportive care organizations; and (2) people living with dementia and family carers. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken. Evidence from these inputs was combined to shape the decision-aid through a series of workshops with key stakeholders, including our patient and public involvement group, which consisted of a person living with dementia and family carers; a group of clinical and academic experts and a group of policy and charity leads. RESULTS: The rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision-making and their effects on people living with dementia and their families. The qualitative interviews discussed a wide range of topics, including trust, agency and confusion in making decisions in the context of COVID-19. The decision-aid primarily focussed on care moves, legal matters, carer wellbeing and help-seeking. CONCLUSIONS: Combining different sources and forms of evidence was a robust and systematic process that proved efficient and valuable in creating a novel decision-aid for family carers within the context of COVID-19. The output from this process is an evidence-based practical decision-aid coproduced with people living with dementia, family carers, clinical and academic experts and leading national dementia and palliative care organizations. PATIENT OR PUBLIC CONTRIBUTION: We worked with people living with dementia and family carers and other key stakeholders throughout this study, from study development and design to inclusion in stakeholder workshops and dissemination.

Trust and inclusion during the Covid-19 pandemic: Perspectives from Black and South Asian people living with dementia and their carers in the UK.

INTRODUCTION: People from ethnic minority backgrounds living with dementia are more likely to be diagnosed later and have less access to health and social care support than their White counterparts in the United Kingdom (UK). Covid-19 has exacerbated health inequalities and diminished trust from underserved communities in the government and health services. The wider aim of the study was to explore the impact of covid-19 on Black and South-Asian people living with dementia and their carers as well as exploring the experiences of dementia care. The present paper specifically explores their views on trust and mistrust using an ecological model. METHOD: Semi-structured interviews were conducted with 11 family carers and four people living with dementia from South Asian or Black communities living in the community. Thematic analysis was used to analyse data. DESIGN: An exploratory qualiative design was used. RESULTS: Four main themes were developed exploring trust at the structural, organisational, community and individual level. At the structural level, participants discussed the inequity of Covid-19, some lack of trust in the UK Government and confusion in its messaging, and the anxiety sometimes leading to curtailment of media usage. At the organisational level, there was some evidence of a perceived lack of person-centred and culturally sensitive care from healthcare professionals, as well as concerns around care homes as places of safety. At the neighbourhood community level, participants discussed both a distrust as well as a strengthening of relationships and, at the individual level, factors such as knowledge of services, identity, and faith influenced their experience of the pandemic. CONCLUSIONS: People living with dementia need support at all levels and this study highlights how the pandemic impacted each level. Ways to improve trust in the Government and health professionals alongside culturally adapted health messaging should be explored. Alongside this, an examination of how cultural values and norms may influence help-seeking responses to dementia and increase trust in services may be helpful post-pandemic.

Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life.

BACKGROUND: People living with dementia account for a large proportion of deaths due to COVID-19. Family carers are faced with making significant and emotive decisions during the pandemic, including decisions about end of life. We aimed to explore the challenges faced by family carers of people living with dementia during the first wave of the COVID-19 pandemic in England, as reported by charity telephone support line staff, who were able to objectively discuss a range of different experiences of many different carers who call the helpline. In particular, we focussed on key concerns and areas of decision making at the end of life. METHODS: We conducted a qualitative study using semi-structured interviews with eight telephone support line staff from two UK based charities who support carers of people living with dementia and those at the end of life. Interviews were conducted in the first wave of the pandemic in England in May-June 2020. RESULTS: An overarching theme of uncertainty and reactivity during a crisis was identified, and within this, five main themes were identified: concerns about care transitions, uncertainty in engaging support and help, pandemic-motivated care planning, maintaining the wellbeing of the person living with dementia, and trust, loss of agency and confusion. CONCLUSIONS: Family carers may be reluctant to seek support because of fear of what may happen to their relative, which may include hospitalisation and becoming ill with COVID-19, care home placement, or not being able to be with a relative at the end of life. In some cases, a lack of trust has developed, and instead carers are seeking support from alternative services they trust such as nationally known charities.This study was used to inform the development of a decision aid to support family carers making decisions about care for their relative with dementia during the pandemic, who the lack the capacity to make their own decisions.

Exploration of the impact of the COVID-19 pandemic on people with dementia and carers from black and minority ethnic groups.

INTRODUCTION: Despite community efforts to support and enable older and vulnerable people during the COVID-19 pandemic, many people with dementia and their family carers are still finding it difficult to adjust their daily living in light of the disruption that the pandemic has caused. There may be needs specific to black, Asian and minority ethnic (BAME) populations in these circumstances that remain thus far unexplored. OBJECTIVE: The aim of the study was to explore the effects of the COVID-19 pandemic on people living with dementia and their family carers of BAME backgrounds, in relation to their experiences of community dementia care and the impact on their daily lives. DESIGN: 15 participants (persons with dementia and carers) were recruited for semistructured qualitative interviews. Respondents were of South Asian and Afro-Caribbean backgrounds. We used thematic analysis to analyse our data from a constructivist perspective, which emphasises the importance of multiple perspectives, contexts and values. RESULTS: There were a number of ways that the COVID-19 pandemic has impacted BAME persons with dementia and carers with regard to their experiences of dementia community care and the impact on their everyday lives. In particular we identified eight key themes, with subthemes: fear and anxiety, food and eating (encompassing food shopping and eating patterns), isolation and identity, community and social relationships, adapting to COVID-19, social isolation and support structures, and medical interactions. Fear and anxiety formed an overarching theme that encompassed all others. DISCUSSION: This paper covers unique and underexplored topics in a COVID-19-vulnerable group. There is limited work with these groups in the UK and this is especially true in COVID-19. The results showed that such impacts were far-reaching and affected not only day-to-day concerns, but also care decisions with long-ranging consequences, and existential interests around fear, faith, death and identity.

Let It Out (LIO) study: protocol for a mixed-methods study to optimise the design and assess the feasibility of an online emotional disclosure-based intervention in UK hospices.

INTRODUCTION: The current COVID-19 pandemic has forced hospices to look for more ways to support people remotely, including psychological support. Emotional disclosure-based interventions hold potential as a way of providing support remotely. However, evidence of their efficacy in people with terminal illness is mixed. Reviews have highlighted this may be due to interventions not being tailored to the unique needs of this population. In response to this, we are developing Let It Out (LIO), an online, self-guided emotional disclosure-based intervention tailored for people living with terminal illness. AIMS: The primary objective of the study is to optimise the design of the LIO intervention. Secondary objectives include assessing its acceptability and feasibility; exploring potential impact on well-being; identifying potential adverse effects; and informing choice of outcome measures for potential future evaluation. METHODS AND ANALYSIS: A single arm, mixed-methods, multisite, longitudinal study. Up to 40 people living with a terminal illness under the care of hospices in England and Scotland will receive the online LIO intervention. LIO consists of 3, self-guided expression sessions over 2 weeks. The primary outcome measures are (1) a structured feedback form completed by participants after the final expression session; and (2) semi-structured interviews and focus groups with ≤15 patient participants, ≤30 hospice staff and ≤15 informal carers. These quantitative and qualitative data will be triangulated via process evaluation to inform optimisation of the intervention design. Secondary outcome measures include validated measures of physical and psychological health collected at baseline and after the final expression session (immediately, 1, 4 and 8 weeks after); and data on recruitment, retention and fidelity. ETHICS AND DISSEMINATION: The study is approved by the University College London Research Ethics Committee (reference: 15281/002). The findings will be shared through peer-reviewed scientific journals and conferences, and traditional, online and social media platforms.

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

INTRODUCTION: The coronavirus pandemic (COVID-19) has affected the functioning and capacity of healthcare systems worldwide. COVID-19 has also disproportionately affected older adults. In the context of COVID-19, decision-making surrounding place of care (PoC) and place of death (PoD) in older adults involves significant new challenges. AIMS: To explore key factors that influence PoC and PoD 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. METHODS: Rapid review of reviews, undertaken using WHO guidance for rapid reviews for the production of actionable evidence. Data extracted was synthesised using narrative synthesis, with thematic analysis and tabulation. RESULTS: 10 papers were included for full data extraction. These papers were published between 2005 and 2020. Papers included discussed actual PoD, as well as preferred. Results were divided into papers that explored the process of decision-making, and those that explored decision-making outcomes. CONCLUSIONS: The 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.