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Introduction: In response to COVID‐19 and mandated physical distancing, a new digital social connection program was developed and implemented by the local community in a large regional town in western Victoria, Australia. This pilot program, the Digital Inclusion‐Social Connections (DI‐SC) program, aimed to support people living with dementia to use a digital device to access social connection activities. Objective: The objective of this study is to inform the local community implementing the DI‐SC program of key stakeholder experience of DI‐SC process and outcomes to support future development and potential translation of digital social connections programs for people living with dementia. Design: Three semi‐structured focus groups and two interviews were conducted with a total of fifteen participants. Data was transcribed verbatim and thematically analysed. Findings: Three main themes were identified describing factors as influencing the process and outcomes of the DI‐SC program: understanding dementia; personal choice and control; and service planning and coordination. Six sub‐themes were identified: matching capability; establishing a relationship; creating opportunities for different interactions; ownership of the device, program coordination and defining the volunteer digital mentor role. Conclusion: Key stakeholders perceived the DI‐SC program as an acceptable way of supporting people living with dementia to engage in activities they found enjoyable promoting social connection with care partners and others. DI‐SC program outcomes were impacted by inappropriate training and a lack of program coordination. The findings of this study may inform future development and implementation of digital social connection programs for vulnerable populations at risk of social isolation. [ABSTRACT FROM AUTHOR]

Objectives: Many family carers of a person with dementia experience pre‐death grief. We aimed to identify strategies that help carers manage pre‐death grief. We hypothesised that emotion and problem focussed styles would be associated with lower, and dysfunctional coping with higher grief intensity. Methods: Mixed methods observational study using structured and semi‐structured interviews with 150 family carers of people with dementia living at home or in a care home. Most participants were female (77%), caring for a parent (48%) or partner/spouse (47%) with mild (25%), moderate (43%) or severe (32%) dementia. They completed the Marwit‐Meuser Caregiver Grief Inventory Short Form and the Brief Coping Orientation to Problems Experienced (Brief‐COPE) questionnaire. We asked carers to identify strategies used for managing grief. We recorded field notes for 150 interviews and audio‐recorded additional interviews with a sub‐sample of 16 participants. Results: Correlations indicated that emotion‐oriented coping was associated with lower grief (R = −0.341), and dysfunctional coping with higher grief (R = 0.435), with a small association with problem‐focused strategies (R = −0.109), partly supporting our hypothesis. Our qualitative themes broadly match the three Brief‐COPE styles. Unhelpful strategies of denial and avoidance align with dysfunctional coping strategies. Psychological strategies (including acceptance and humour) and seeking support were consistent with emotion‐focused strategies, but we did not identify a theme relating to problem‐focused strategies. Conclusion: Most carers identified multiple strategies for processing grief. Carers could readily identify supports and services that they found helpful for managing pre‐death grief, yet current services appear under‐resourced to meet growing demand. [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]

Background: Family carers of people living with dementia often need support with making decisions about care. Many find end‐of‐life care decisions particularly difficult. The aim of this article is to present an evidence‐ and theoretical‐based process for developing a decision aid to support family carers of people with dementia towards the end‐of‐life. Methods: Following a systematic process, we developed a decision aid using coproduction methods and matrices to synthesize data from a systematic review and qualitative interviews with people living with dementia and family carers. Data were presented to coproduction workshops of people living with dementia, family carers, practitioners and professionals. Development was guided by the Ottawa Decision Support Framework and a modified Interprofessional Shared Decision‐Making model. Results: The decision aid covers four decision areas: (1) changes in care; (2) eating and drinking difficulties; (3) everyday well‐being; and (4) healthcare, tests and medication. We present an interactive decision aid, using a variety of approaches including written text, Frequently Asked Questions, top tips and illustrative quotes from people living with dementia and family carers. Conclusion: This is the first decision aid that focusses on multiple decisions towards the end‐of‐life in dementia care. The process offers a template for others to develop decision aids or similar interventions, and how to include people living with dementia in coproduction. Patient or Public Contribution: Family carers provided feedback on data collection, data analysis and the decision aid, and one is a coauthor. People living with dementia and family carers were integral to the coproduction workshops. [ABSTRACT FROM AUTHOR]

Objectives: Globally, the number of people with dementia who have palliative care needs will increase fourfold over the next 40 years. The Empowering Better End-of-Life Dementia Care (EMBED-Care) Programme aims to deliver a step change in care through a large sequential study, spanning multiple work streams.Methods: We will use mixed methods across settings where people with dementia live and die: their own homes, care homes, and hospitals. Beginning with policy syntheses and reviews of interventions, we will develop a conceptual framework and underpinning theory of change. We will use linked data sets to explore current service use, care transitions, and inequalities and predict future need for end-of-life dementia care. Longitudinal cohort studies of people with dementia (including young onset and prion dementias) and their carers will describe care transitions, quality of life, symptoms, formal and informal care provision, and costs. Data will be synthesised, underpinned by the Knowledge-to-Action Implementation Framework, to design a novel complex intervention to support assessment, decision making, and communication between patients, carers, and inter-professional teams. This will be feasibility and pilot tested in UK settings. Patient and public involvement and engagement, innovative work with artists, policymakers, and third sector organisations are embedded to drive impact. We will build research capacity and develop an international network for excellence in dementia palliative care.Conclusions: EMBED-Care will help us understand current and future need, develop novel cost-effective care innovations, build research capacity, and promote international collaborations in research and practice to ensure people live and die well with dementia. [ABSTRACT FROM AUTHOR]

Objectives: To explore current practice and the role of UK care homes and Admiral Nurses in helping people living with dementia and their family carers prepare for end‐of‐life. Methods: We conducted an online survey with all UK Admiral Nurses (59% response rate) and a random sample of Gold Standards Framework accredited care homes in England and Wales (38% response rate). We used descriptive statistics to report survey findings. Results: While respondents commonly discussed the progressive nature of dementia with people living with dementia and family carers, they less frequently spoke to people with dementia or carers about the nature of dementia as life shortening, terminal, or a disease you can die from. Admiral Nurses highlighted that where service models reduced continuity of care, opportunities for ongoing discussion and developing relationships that supported these discussions were reduced. Admiral Nurses and care homes raised concerns about conversations being left too late, when the person with dementia no longer had capacity to engage. There was a high level of agreement with all European Association of Palliative Care and National Institute for Health and Care Excellence (NICE) statements presented regarding end‐of‐life care planning and discussions. Conclusions: Our survey of care homes and Admiral Nurses, combined with findings from our previous survey of UK memory services, increases our understanding of how services help people with dementia and family carers prepare for end‐of‐life. We found fragmentation across the service system, lack of continuity, and tensions regarding when these conversations should be initiated and by whom. [ABSTRACT FROM AUTHOR]

Objectives: The objective of the study is to explore current practice and the role taken by UK memory services in helping carers of people with dementia prepare for the end of life.Methods: We used mixed methods including a survey (48 responses/51% response rate) and semistructured interviews (n = 12) with clinicians working in UK memory services accredited by the Memory Services National Accreditation Programme. We used descriptive statistics to report survey findings and thematically analysed interview and survey qualitative data.Results: Surveys: services routinely discussed with carers the progressive nature of dementia (89%), legal arrangements (health: 72%; finances: 74%), advance care planning (63%), and implications of loss of capacity (61%). Fewer services routinely discussed the terminal nature of dementia (41%) and meaning of death (11%) with carers. Most (89%) agreed that these conversations were in line with their role. Interview findings corresponded with survey findings. Themes included diagnosis considered too early to discuss end of life, discussions being inconsistent with a "living well" approach, people with dementia being resistant to conversations, and discussions of spirituality crossing professional boundaries. Services' capacity for follow-up with carers impacted on ability to broach these topics.Conclusions: More in-depth and distressing topics such as end of life and advance care planning require longer follow-up to establish relationships to broach difficult topics. Variability in follow-up practices between services created inequity in the extent to which memory services could address these topics. More research is required to investigate the best method for broaching these topics with carers and the person with mild dementia within different health care contexts. [ABSTRACT FROM AUTHOR]