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Background: People with dementia have complex palliative care needs that are often unmet, including physical and psycho‐social needs. It is essential to empower people with dementia, family carers and professionals to better assess and manage care needs. We aimed to co‐design a palliative dementia care Framework delivered through a digital app to support holistic assessment and decision making for care in the community and care homes—the EMBED‐Care Framework. Methods: A systematic co‐design approach was adopted to develop the EMBED‐Care Framework across three stages: 1) Framework analysis to synthesise data from preceding evidence reviews, large routine clinical data and cohort studies of unmet palliative dementia care need; 2) Co‐design using iterative workshops with people with dementia, family carers and health and social care professionals to construct the components, design of the app and implementation requirements; and 3) User testing to refine the final Framework and app, and strengthen use for clinical practice and methods of evaluation. Results: The Framework was co‐designed for delivery through an app delivered by aTouchAway. It comprised five main components: 1) holistic assessment of palliative care needs using the Integrated Palliative care Outcome Scale‐Dementia (IPOS‐Dem); 2) alert system of IPOS‐Dem scores to highlight unmet needs; 3) IPOS‐Dem scores and alerts enable shared decision making between the practitioner, patient and/or carer to support priority setting and goals of care; 4) evidence‐informed clinical decision support tools automatically linked with identified needs to manage care; and 5) Training package for users incorporating face‐to‐face sessions, clinical champions who received additional face‐to‐face sessions, animated videos and manual covering the main intervention components and email and telephone support from the research team. Conclusions: This is a novel digital palliative dementia care intervention to link holistic assessment with clinical decision support tools that are practical and easy to use but address the complexity of palliative dementia care. The Framework is ready for feasibility testing and pilot studies for people with dementia residing at home or in a care home. Patient or Public Contribution: We were guided by our Patient and Public Involvement (PPI) group consisting of three people with mild dementia, including younger onset dementia, and seven family carers throughout the project. They supported the overall development of the Framework, including planning of workshops, interpreting findings and testing the framework in our PPI meetings. [ABSTRACT FROM AUTHOR]

Background: Inequalities in access to palliative and end of life care are longstanding. Integration of primary and palliative care has the potential to improve equity in the community. Evidence to inform integration is scarce as research that considers integration of primary care and palliative care services is rare. Aim: To address the questions: 'how can inequalities in access to community palliative and end of life care be improved through the integration of primary and palliative care, and what are the benefits?' Design: A theory-driven realist inquiry with two stakeholder workshops to explore how, when and why inequalities can be improved through integration. Realist analysis leading to explanatory context(c)-mechanism(m)-outcome(o) configurations(c) (CMOCs). Findings: A total of 27 participants attended online workshops (July and September 2022): patient and public members (n = 6), commissioners (n = 2), primary care (n = 5) and specialist palliative care professionals (n = 14). Most were White British (n = 22), other ethnicities were Asian (n = 3), Black African (n = 1) and British mixed race (n = 1). Power imbalances and racism hinder people from ethnic minority backgrounds accessing current services. Shared commitment to addressing these across palliative care and primary care is required in integrated partnerships. Partnership functioning depends on trusted relationships and effective communication, enabled by co-location and record sharing. Positive patient experiences provide affirmation for the multi-disciplinary team, grow confidence and drive improvements. Conclusions: Integration to address inequalities needs recognition of current barriers. Integration grounded in trust, faith and confidence can lead to a cycle of positive patient, carer and professional experience. Prioritising inequalities as whole system concern is required for future service delivery and research. [ABSTRACT FROM AUTHOR]

Background: Digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. However, the views and experiences of patients and carers are little understood, impeding the development and impact of digital approaches to strengthen palliative and end-of-life care. Aim: To explore perspectives of patients with progressive illness and their carers on digital approaches to advance care planning, anticipated impact from their use and expectations for their future development. Design: A qualitative study employing thematic framework analysis of data collected from focus groups and semi-structured interviews. Setting/participants: Purposive sample of 29 patients and 15 current or bereaved carers in London and West Yorkshire from hospice settings, non-governmental support and advocacy groups, and care home residents. Results: Four generated themes included: 1. ' Why haven't you read what's wrong with me? '; uncertainty around professionals' documenting, sharing and use of information; 2. The art of decision-making relies on the art of conversation; 3. The perceived value in having ' a say in matters ': control and responsibility; 4. Enabling patient and carer control of their records: ' custodianship is key '. Conclusions: Lived experiences of information sharing influenced trust and confidence in digital advance care planning systems. Despite scepticism about the extent that care can be delivered in line with their preferences, patients and carers acknowledge digital systems could facilitate care through contemporaneous and accurately documented wishes and preferences. There remains a need to determine how independent patient and public-facing advance care planning resources might be integrated with existing digital health record systems. [ABSTRACT FROM AUTHOR]

The article estimates the rising demand for palliative care among individuals living with dementia in England and Wales, projecting significant increases by 2040. Topics discussed include the current and future prevalence of dementia, the importance of integrating palliative care for managing symptoms, and the necessity for healthcare systems to enhance capacity to meet these escalating needs.

Introduction: Shared decision‐making intends to align care provision with individuals' preferences. However, the involvement of people living with dementia in decision‐making about their care varies. We aimed to co‐design the EMBED‐Care Framework, to enhance shared decision‐making between people affected by dementia and practitioners. Methods: A theory and evidence driven co‐design study was conducted, using iterative workshops, informed by a theoretical model of shared decision‐making and the EMBED‐Care Framework (the intervention) for person‐centred holistic palliative dementia care. The intervention incorporates a holistic outcome measure for assessment and review, linked with clinical decision‐support tools to support shared decision‐making. We drew on the Medical Research Council (MRC) guidance for developing and evaluating complex interventions. Participants included people with dementia of any type, current or bereaved family carers and practitioners. We recruited via established dementia groups and research and clinical networks. Data were analysed using reflexive thematic analysis to explore how and when the intervention could enhance communication and shared decision‐making, and the requirements for use, presented as a logic model. Results: Five co‐design workshops were undertaken with participants comprising people affected by dementia (n = 18) and practitioners (n = 36). Three themes were generated, comprising: (1) 'knowing the person and personalisation of care', involving the person with dementia and/or family carer identifying the needs of the person using a holistic assessment. (2) 'engaging and considering the perspectives of all involved in decision‐making' required listening to the person and the family to understand their priorities, and to manage multiple preferences. (3) 'Training and support activities' to use the Framework through use of animated videos to convey information, such as to understand the outcome measure used to assess symptoms. Conclusions: The intervention developed sought to enhance shared decision‐making with individuals affected by dementia and practitioners, through increased shared knowledge of individual priorities and choices for care and treatment. The workshops generated understanding to manage disagreements in determining priorities. Practitioners require face‐to‐face training on the intervention, and on communication to manage sensitive conversations about symptoms, care and treatment with individuals and their family. The findings informed the construction of a logic model to illustrate how the intervention is intended to work. [ABSTRACT FROM AUTHOR]

Timely and safe administration of injectable medications for patients at home is vital in optimally managing distressing symptoms in the final days of life. This article discusses a service evaluation of family carers' (including close friends) administrating subcutaneous end-of-life medications. The procedure was not intended to become normal care, rather the exception when appropriate and needed, with 24/7 skilled support from community nursing and palliative care services. A service evaluation of the procedure was undertaken in rural and urban areas in the South East of England. The procedure ran over 6 months and used detailed processes with recruitment criteria to mitigate risk of harm. In total, 11 patients participated with their family carers, including five carers with experience in healthcare roles. Of the 11 family carers, 10 were able to administer injections safely with structured training and support in place. Patients received timely symptom relief and their family carers were able to support loved ones by administering injectable medications rapidly without waiting for a nurse to arrive. This was particularly welcomed in more rural areas where waiting times were greater due to the large geographical area covered and limited staff availability during out-of-hours periods. The findings informed a carefully monitored wider rollout and ongoing evaluation in adult community nursing services in the NHS Trust. [ABSTRACT FROM AUTHOR]

Background: Depression and anxiety are common comorbidities in heart failure (HF) and are associated with adverse outcomes including unplanned hospitalization. However, there is insufficient evidence on the factors associated with depression and anxiety for community patients with HF to inform optimal assessment and treatment in this population. Aim: The aim of this study was to examine the prevalence of and factors associated with depression and anxiety in community-dwelling patients with HF. Methods: A retrospective cohort study of 302 adult patients given a diagnosis of HF referred to United Kingdom's largest specialist cardiac rehabilitation center, from June 2013 to November 2020. Main study outcomes were symptoms of depression using Patient Health Questionnaire-9 and anxiety using the General Anxiety Disorder 7-item scale. Explanatory variables included demographic and clinical characteristics and functional status from the Dartmouth COOP questionnaire: quality of life, pain, level of social activity and daily activities, and being bothered by emotional problems (feelings). Logistic regressions were performed to evaluate the association between demographic and clinical characteristics and depression and anxiety. Results: Of the sample, 26.2% reported depression and 20.2% had anxiety. Higher depression and anxiety were associated with difficulty in performing daily activities (95% confidence interval, 1.11–6.46 and 1.13–8.09, respectively) and being bothered by feelings (95% confidence interval, 4.06–21.77 and 4.25–22.46, respectively). Depression was associated with limitations in social activity (95% confidence interval, 1.06–6.34) and anxiety with distressing pain (95% confidence interval, 1.38–7.23). Conclusion: Findings indicate the importance of psychosocial interventions for patients with HF to minimize and manage depression and anxiety. Patients with HF may benefit from interventions targeted to maintain independence, promote participation in social activities, and optimally manage pain. [ABSTRACT FROM AUTHOR]

Background emergency department (ED) visits have inherent risks for people with dementia yet increase towards the end-of-life. Although some individual-level determinants of ED visits have been identified, little is known about service-level determinants. Objective to examine individual- and service-level factors associated with ED visits by people with dementia in the last year of life. Methods retrospective cohort study using hospital administrative and mortality data at the individual-level, linked to health and social care service data at the area-level across England. The primary outcome was number of ED visits in the last year of life. Subjects were decedents with dementia recorded on the death certificate, with at least one hospital contact in the last 3 years of life. Results of 74,486 decedents (60.5% women; mean age 87.1 years (standard deviation: 7.1)), 82.6% had at least one ED visit in their last year of life. Factors associated with more ED visits included: South Asian ethnicity (incidence rate ratio (IRR) 1.07, 95% confidence interval (CI) 1.02–1.13), chronic respiratory disease as the underlying cause of death (IRR 1.17, 95% CI 1.14–1.20) and urban residence (IRR 1.06, 95% CI 1.04–1.08). Higher socioeconomic position (IRR 0.92, 95% CI 0.90–0.94) and areas with higher numbers of nursing home beds (IRR 0.85, 95% CI 0.78–0.93)—but not residential home beds—were associated with fewer ED visits at the end-of-life. Conclusions the value of nursing home care in supporting people dying with dementia to stay in their preferred place of care must be recognised, and investment in nursing home bed capacity prioritised. [ABSTRACT FROM AUTHOR]