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Objectives: Depression and anxiety are common in frail older people and are associated with high levels of morbidity and mortality, yet they typically face greater barriers to accessing mental health treatments than younger people and express preferences for self-managing their symptoms. This study aims to explore frail older adults' experiences of self-managing symptoms of depression and/or anxiety. Design: Qualitative semi-structured interviews, exploring experiences of depression and/or anxiety, ways participants self-managed these and the contexts within which this took place. Interviews were audio-recorded and transcribed verbatim. Participants: 28 frail older adults in the United Kingdom, purposively sampled for neighbourhood, frailty and symptoms of anxiety/depression. Analysis: Thematic analysis to inductively derive themes from the data. Results: Our findings suggest that frail older adults find maintaining independence, engaging in meaningful activities, and socialising and peer support important for self-managing depression and anxiety. These could all be adapted to the level of frailty experienced. Drawing on life experiences, addressing the perceived cause and faith were helpful in some situations and for some personalities. Distraction and avoidance were helpful for more severe symptoms or where the causes of symptoms could not be resolved. Self-management strategies were less well-established for anxiety symptoms, especially when linked to newer health fears and worries about the future. Conclusions: Developing services and sources of information that support and facilitate key therapeutic components of self-management, which align with older adults' preferred coping styles and take into account levels of frailty, may be a way of supporting frail older people waiting for mental health treatments or those who prefer not to access these. Greater awareness of anxiety and how it can be self-managed in frail older people is needed. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The aim of this paper was to understand the needs of family caregivers and professionals supporting people living with dementia with eating and drinking difficulties towards the end of life and the strategies they use to overcome them. A total of 41 semi‐structured interviews with family caregivers (n = 21) and professionals (n = 20) were conducted in London and surrounding areas of England. Interviews were audio‐recorded and transcribed verbatim. Four themes were identified: caregivers accessing and seeking help, perceived priorities of care, professionals' supportiveness and educational role, and strategies. Caregivers often struggle as they are not aware of the eating and drinking difficulties associated with dementia's progression. Care can change over time with families prioritising a person's comfort towards the end of life rather than ensuring a particular level of nutrition. Mutual support is required by both professionals and caregivers to enhance the care of the person living with dementia. Cognitive difficulties are often behind initial eating and drinking challenges in dementia, whereas physical challenges take over towards the later stages. Flexibility and creativity are key to adapting to changing needs. There is a need to raise awareness of the eating and drinking challenges associated with the progression of dementia. Professionals can help caregivers embark on the transition towards focussing on comfort and enjoyment of eating and drinking near the end of life rather than nutrition. This is particularly relevant for those caring for a relative living at home. Caregivers' input is needed to tailor professionals' recommendations. [ABSTRACT FROM AUTHOR]

Depression and anxiety are common in later life, particularly when people are frail. This leads to reduced quality of life, faster decline in physical health and increased health/social care use. Available treatments are commonly not tailored to people with frailty. We explored frail older peoples' experiences of depression and/or anxiety and how services could be adapted to their needs. Semi-structured interviews with 28 older people in the UK purposively sampled for practice location and severity of frailty and anxiety/depression. We asked about symptoms, interactions with physical health, help-seeking, treatments and what might help in future. We audio-recorded and transcribed interviews, using thematic analysis to inductively derive themes. Frail older people had low expectations of their wellbeing at this point in life due to multiple physical health issues and so anxiety and mild depressive symptoms were normalised. There was a particular reluctance and uncertainty regarding help-seeking for anxiety. Treatments were considered appropriate where they aligned with coping skills developed over their lifetime, and facilitated independence and problem-solving skills. Most older people felt their knowledge of mental health was limited and relied upon information about and endorsement of therapies from an expert. This was usually their GP, but access was often problematic. Online methods of accessing information and therapies were not popular. Mental health support for frail older people needs to address late-life anxieties as well as depression, account for physical health issues, align with older people's need for independence and facilitate coping skills. [ABSTRACT FROM AUTHOR]

Background and Objectives Late-life depression is a major societal concern, but older adults' attitudes toward its treatment remain complex. We aimed to explore older adults' views regarding depression and its treatment. Research Design and Methods We undertook a systematic review and thematic synthesis of qualitative studies that explored the views of older community-dwelling adults with depression (not actively engaged in treatment), about depression and its treatment. We searched 7 databases (inception–November 2018) and 2 reviewers independently quality-appraised studies using the CASP checklist. Results Out of 8,351 records, we included 11 studies for thematic synthesis. Depression was viewed as a normal reaction to life stressors and ageing. Consequently, older adults preferred self-management strategies (e.g., socializing, prayer) that aligned with their lived experiences and self-image. Professional interventions (e.g., antidepressants, psychological therapies) were sometimes considered necessary for more severe depression, but participants had mixed views. Willingness to try treatments was based on a balance of different judgments, including perceptions about potential harm and attitudes based on trust, familiarity, and past experiences. Societal and structural factors, including stigma, ethnicity, and ageism, also influenced treatment attitudes. Discussion and Implications Supporting older adults to self-manage milder depressive symptoms may be more acceptable than professional interventions. Assisting older adults with accessing professional help for more severe symptoms might be better achieved by integrating access to help within familiar, convenient locations to reduce stigma and increase accessibility. Discussing treatment choices using narratives that engage with older adults' lived experiences of depression may lead to greater acceptability and engagement. [ABSTRACT FROM AUTHOR]

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. Key points: The pandemic impacted people from ethnic minority backgrounds living with dementia and their carers at each level of the socioecological modelA lack of trust in the Government and an increase in anxiety due to the media was reportedThere was a perceived lack of person‐centred and culturally sensitive care from healthcare professionals and concerns around care homes as places of safetyParticipants relationships with their community, knowledge of services, identity, and faith influenced their experience of the pandemic [ABSTRACT FROM AUTHOR]

Background Eating and drinking problems are common among people living with later-stage dementia, yet few studies have explored their perspectives. Objective This study aimed to explore how people living with mild dementia understand possible future eating and drinking problems and their perspectives on assistance. Design Qualitative study using semi-structured interviews. Setting Community. Methods We conducted semi-structured interviews with 19 people living with mild dementia. Interviews were transcribed verbatim and analysed thematically. Results Five themes were identified: (i) awareness of eating and drinking problems; (ii) food and drink representing an individual's identity and agency; (iii) delegating later decisions about eating and drinking to family carers; (iv) acceptability of eating and drinking options; and (v) eating and drinking towards the end of life. For people living with mild dementia, possible later eating and drinking problems could feel irrelevant and action may be postponed until they occur. Fears of being a burden to family and of being treated like a child may explain reluctance to discuss such future problems. People living with mild dementia might wish to preserve their agency and maintain good quality of life, rather than be kept alive at later stages by artificial nutrition and hydration. Conclusion For people with mild dementia, eating and drinking problems may seem unrelated to them and so get left undiscussed. Negative connotations regarding eating and drinking problems may hinder the discussion. The optimal time to discuss possible future problems with eating and drinking with people with mild dementia may need an individual approach. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Aims: To synthesize the qualitative evidence of the views and experiences of people living with dementia, family carers, and practitioners on practice related to nutrition and hydration of people living with dementia who are nearing end of life. Design: Systematic review and narrative synthesis of qualitative studies. Data sources: MEDLINE, Embase, PsycINFO, CINAHL. Review methods: Databases were searched for qualitative studies from January 2000‐February 2020. Quantitative studies, or studies reporting on biological mechanisms, assessments, scales or diagnostic tools were excluded. Results were synthesized using a narrative synthesis approach with thematic analysis. Results: Twenty studies were included; 15 explored the views of practitioners working with people living with dementia in long‐term care settings or in hospitals. Four themes were developed: challenges of supporting nutrition and hydration; balancing the views of all parties involved with 'the right thing to do'; national context and sociocultural influences; and strategies to support nutrition and hydration near the end of life in dementia. Conclusion: The complexity of supporting nutrition and hydration near the end of life for someone living with dementia relates to national context, lack of knowledge, and limited planning while the person can communicate. Impact: This review summarizes practitioners and families' experiences and highlights the need to include people living with dementia in studies to help understand their views and preferences about nutrition and hydration near the end of life; and those of their families supporting them in the community. The review findings are relevant to multidisciplinary teams who can learn from strategies to help with nutrition and hydration decisions and support. [ABSTRACT FROM AUTHOR]