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Background: Dementia is a life-limiting illness, but the trajectory of dying can be difficult to establish and care at end of life can be variable and problematic. Methods: This UK study was carried out to explore the end-of-life-care experiences of people with dementia from the perspective of their family carers. In-depth interviews were conducted with 40 bereaved family carers of people with dementia. Results: Forty family carers (male n = 9, female n = 31) age range: 18–86 years were interviewed. Issues with poor communication were common. The hard work of caring and issues regarding unpredictability of living and dying with dementia were also commonplace within the study. Only three patients were referred for specialist palliative care support at the end of life, all of whom had a dual diagnosis of dementia and cancer. Conclusion: This qualitative study has identified that there are several gaps in the end-of-life care of people with dementia, and frequently, there is poor communication during the last year of life. The need for high-quality integrated care for people dying with dementia with appropriate support during the last year of life is identified. COVID-19 has disproportionately affected people with dementia, and in the post-pandemic era, there is an urgent need to ensure every person dying with dementia is supported to die in their preferred place and that family members are supported and enabled to be treated as the 'expert' in terms of their knowledge of their relatives' care and preferences. [ABSTRACT FROM AUTHOR]

Background inequalities and gaps in post-diagnostic support (PDS) for people with dementia persist despite a policy focus on dementia in England and Wales. Understanding and overcoming the factors contributing to these inequalities is vital to improve care for people living with dementia (PLWD) and their families. Objective to explore common barriers to the delivery of PDS in England and Wales and describe successful strategies to address them, drawing on examples from current practice. Design qualitative semi-structured interviews, focus groups and observation. Settings Phase 1: interviewees were drawn from multiple sectors across England and Wales, including NHS clinical commissioning groups and social care. Phase 2: six case study sites based in different sectors (primary care, secondary mental health and third sector) in England. Participants Phase 1: 61 professionals, including commissioners and service managers. Phase 2: 68 professionals, including frontline staff and those working in related services; 17 PLWD; 31 carers. Results barriers to implementing PDS in dementia were an unsupportive infrastructure, limited proactive review and limited capacity and capability particularly in primary care. Strategies used successfully in practice to address these challenges included creating opportunities for service development, improving joint working, supporting non-specialists and developing ongoing, holistic review and care planning. Conclusion a range of practical strategies have been identified to address many of the common barriers to PDS in dementia. To achieve policy goals of a task-shifted and task-shared approach to PDS, widespread use of these strategies is recommended. [ABSTRACT FROM AUTHOR]

Background: Locating technologies are a subtype of assistive technology that aim to support persons with dementia by helping manage spatial orientation impairments and provide aid to care partners by intervening when necessary. Although a variety of locating devices are commercially available, their adoption has remained low in the past years. Several studies have explored barriers to the adoption of assistive technologies from the perspective of professional stakeholders, but in-depth explorations for locating technologies are sparse. Additionally, the inputs of business professionals are lacking. The aim of this study was to expand knowledge on barriers to the adoption of locating technologies from a multi-stakeholder professional perspective, and to explore strategies to optimize adoption.Methods: In total, 22 professionals working in business (n = 7), healthcare (n = 6) and research (n = 9) fields related to gerontology and gerontechnology participated in our focus group study. Perceptions on the value of using locating technologies for dementia care, barriers to their adoption, as well as salient services and information dissemination strategies were explored. After verbatim transcription, transcripts were analysed following an inductive data-driven content analysis approach in MAXQDA.Results: Six key adoption barriers centering on: (1) awareness-, (2) technological-, (3) product characteristic- and (4) capital investment-based limitations, (5) unclear benefits, as well as (6) ethical concerns emerged. The interplay between barriers was high. Five core themes on services and information dissemination strategies centering on: (1) digital autonomy support, (2) emergency support, (3) information dissemination actors, (4) product acquisition, and (5) product advertising were extracted.Conclusions: Our study with interdisciplinary stakeholders expands knowledge on barriers to the adoption of locating technologies for dementia care, and reinforces recommendations that an interdisciplinary strategy is needed to optimize adoption. Also, our findings show that focusing on services to increase digital autonomy and on information dissemination strategies has been largely overlooked and may be particularly effective. [ABSTRACT FROM AUTHOR]

Background: The implementation of clearly structured dementia-specific case conferences could be an important tool to enable nursing staff to properly analyse and manage challenging behaviour in nursing home residents with dementia. A process evaluation of the responses of nursing homes to the implementation of WELCOME-IdA (Wittener model of case conferences for people with dementia – the Innovative dementia-oriented Assessment tool) was carried out to gain insight into which key elements of the intervention were adopted by the nursing homes and which elements were adapted. Methods: This study was part of a larger process evaluation using a qualitative design. Thirty-four semi-structured telephone interviews and 15 focus group interviews were conducted in four nursing homes. The interviews were analysed using deductive content analysis, although inductive categories have been developed. Results: Nursing home staff adopted the roles of moderator, case reporter, keeper of the minutes and reflection partner in WELCOME-IdA, but the selection of the staff members who filled these roles differed across nursing homes. The recommended group size of 5–8 participants per case conference was sometimes adopted. The key element of having core nursing teams who participated continuously in all case conferences was not adopted at all. Instead, there was a high level of rotation among staff members. The pre-defined process structure of WELCOME-IdA was adapted in such a way that the assessment of the residents' behaviour and the selection of the relevant domain for the behaviour analysis were conducted in advance of the case conference. The evaluation of the interventions was also organized differently. Conclusion: The scope of the response implies that WELCOME-IdA requires further adaptation to the requirements of nursing processes in nursing homes. The results provide important information on the selection of role keepers and offer insights into a) how knowledge of the structured training was circulated and transformed into self-organized case conferences and b) how knowledge was circulated throughout the entire processing of one case. Thus, these results can be used to optimize intervention and implementation. Overall, the intervention should allow more possibilities for tailored adaptation than it currently does. [ABSTRACT FROM AUTHOR]

Background Health and social care services are under strain providing care in the community particularly at hospital discharge. Patient and carer experiences can inform and shape services. Objective To develop service user-led recommendations enabling smooth transition for people living with memory loss from acute hospital to community. Design Lead and co-researchers conducted semi-structured interviews with 15 pairs of carers and patients with memory loss at discharge, 6 and 12 weeks post-discharge and one semi-structured interview with health and social care professionals and Admiral Nurses. Framework analysis was guided by co-researchers. Two focus groups of study participants, facilitated by co-researchers, met to shape and finalize recommendations. Setting and participants Recruitment took place in acute hospitals in two National Health Service (NHS) Trusts in England. Patients were aged 65 and over, with memory loss, an in-patient for at least 1 week returning to the community, who had a carer consenting to be in the study. Results Poor delivery of services caused considerable stress to some study families living with memory loss. Three key recommendations included a need for a written, mutually agreed discharge plan, a named coordinator of services, and improved domiciliary care services. Discussion and conclusions Vulnerable patients with memory loss find coming out of hospital after an extended period a stressful experience. The SHARED study contributes to understanding the hospital discharge process through the eyes of the patient and carer living with memory loss and has the potential to contribute to more efficient use of resources and to improving health outcomes in communities. [ABSTRACT FROM AUTHOR]

Background: Residential aged care is an increasingly important health setting due to population ageing and the increase in age-related conditions, such as dementia. However, medical education has limited engagement with this fast-growing sector and undergraduate training remains primarily focussed on acute presentations in hospital settings. Additionally, concerns have been raised about the adequacy of dementia-related content in undergraduate medical curricula, while research has found mixed attitudes among students towards the care of older people. This study explores how medical students engage with the learning experiences accessible in clinical placements in residential aged care facilities (RACFs), particularly exposure to multiple comorbidity, cognitive impairment, and palliative care.Methods: Fifth-year medical students (N = 61) completed five-day clinical placements at two Australian aged care facilities in 2013 and 2014. The placements were supported by an iterative yet structured program and academic teaching staff to ensure appropriate educational experiences and oversight. Mixed methods data were collected before and after the clinical placement. Quantitative data included surveys of dementia knowledge and questions about attitudes to the aged care sector and working with older adults. Qualitative data were collected from focus group discussions concerning medical student expectations, learning opportunities, and challenges to engagement.Results: Pre-placement surveys identified good dementia knowledge, but poor attitudes towards aged care and older adults. Negative placement experiences were associated with a struggle to discern case complexity and a perception of an aged care placement as an opportunity cost associated with reduced hospital training time. Irrespective of negative sentiment, post-placement survey data showed significant improvements in attitudes to working with older people and dementia knowledge. Positive student experiences were explained by in-depth engagement with clinically challenging cases and opportunities to practice independent clinical decision making and contribute to resident care.Conclusions: Aged care placements can improve medical student attitudes to working with older people and dementia knowledge. Clinical placements in RACFs challenge students to become more resourceful and independent in their clinical assessment and decision-making with vulnerable older adults. This suggests that aged care facilities offer considerable opportunity to enhance undergraduate medical education. However, more work is required to engender cultural change across medical curricula to embed issues around ageing, multiple comorbidity, and dementia. [ABSTRACT FROM AUTHOR]