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Introduction: Professional caregivers' perspectives on dementia and on people living with dementia (PlwD) can influence their feelings, judgements and behaviours in work situations, for example, how they think about symptoms, disease progression and the impact on a person's quality of life. Their individual dementia mindset, which can be investigated with the 12-item Dementia Mindset Scale (DMS), might influence job satisfaction, work-related well-being and person-centred care. The aim of the proposed replication study is to confirm the results of the original study of the DMS and to test whether a malleable mindset is correlated with higher levels of caregiver education, dementia-specific professional experience/competence and dementia knowledge., Methods and Analysis: Professional caregivers in residential care facilities for older persons who work directly with PlwD will be asked to answer an anonymous web-based online survey. The survey encompasses five standardised questionnaires: the DMS, the Dementia Knowledge Assessment Scale, the Oldenburg Burnout Inventory, the Job-related Affective Well-being Scale and the Sense of Competence in Dementia Care Staff Scale. In addition, job satisfaction, the educational background, professional experience and work situation are surveyed. For replication, the analyses will re-evaluate the psychometric properties (structural validity, model fit, internal consistency and predictive validity) by applying descriptive statistics, regression analysis, confirmatory factor analysis and correlation analysis. The additional analyses will use descriptive statistics, regression analysis and correlation analysis. Rasch analysis will be used to rank the difficulty of the items., Ethics and Dissemination: This study was approved by the ethics committee of the German Society of Nursing Science (ID number 23-004). No personal information will be gathered. The results of the study will be distributed nationally and internationally through peer-reviewed academic journals, conferences, institutional websites and journals for nursing care practice., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: In the last phase of their lives, people living with dementia often indicate restlessness, anxiety or pain. Further, their care is considered inadequate, as they are, for example, sometimes overtreated for curative care or undertreated for pain management. These patients also face multiple barriers in accessing palliative care. This qualitative study explores the perception of experts about how people living with dementia in Germany are cared for at home toward the end of their lives., Methods: A total of 12 experts involved in outpatient/palliative care were recruited to constitute a purposive, heterogeneous sample. Interviews, which were structured using an interview guide, were conducted with physicians, nurses, representatives of health insurance funds, welfare associations, municipal counselling centres, scientists and coordinators of outpatient palliative care and voluntary work; the interviews were transcribed and analysed via thematic content analysis, based on Kuckartz's method., Results: The analysis of the results led to the establishment of four main categories that focused on formal care arrangements, the roles of relatives in care arrangements, the specifics of dementia, and restrictions on access to palliative care., Conclusions: Suitable end-of-life care for people living with dementia and support for their relatives require resources and the conceptualisation of specific care arrangements to help minimise potential barriers that prevent access to palliative care., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Background: The care of people with dementia (PwD) living at home is mainly provided by family carers who intend to maintain care at home for as long as possible. In the DZNE-SoCA project, a middle range theory of stability of home-based care arrangements for people living with dementia (SoCA-Dem theory) has been developed. The theory helps to understand the complex phenomenon of stability, provides a theoretical framework that can guide future research and can be used for the (further) development of home care structures., Aim: The aim of this substudy of the SoCA project was to examine whether the SoCA-Dem theory can guide German health and social care practice in dealing with family carers of PwD., Material and Methods: The two guidelines for healthcare professionals, the concept of the Centre for Quality in Care (ZQP) "Quality framework for counselling in care" and the DEGAM guidelines for general practitioners "Family carers of adults", were evaluated using a content analysis with respect to the SoCA-Dem theory., Results: Most concepts that constitute stability are addressed in both guidelines. The SoCA-Dem theory illustrates the importance of the interaction between the different concepts for the stability of home-based care arrangements. In the guidelines, the dynamic interplay remains unclear., Conclusion: The SoCA-Dem theory seems to be compatible with the German health care context and can support a future shift from a stress-oriented view of giving care to a more comprehensive one., (© 2022. The Author(s).)

Background: Most people with dementia live at home and are supported by informal carers. During the care trajectory, the creation of a stable care situation is a guiding principle of informal carers, who often manage complex care arrangements. A recently developed theory - 'Stability of home-based care arrangements for people living with dementia' (SoCA-Dem) - conceptualises how such care arrangements develop over time, and it highlights the relevance of the dyadic relationship, carer role, and resources with regard to the continuation of home-based care throughout the course of dementia. To further explore these three concepts, and to provide feedback for a further refinement of SoCA-Dem theory, this study aims to gain a deeper understanding of (1) how informal carers perceive their dyadic relationship, their carer role, and the resources of the care arrangement, and (2) how these concepts are interrelated., Methods: This study was a secondary data analysis of n = 11 problem-centred interviews. Data were interpreted by a thematic qualitative text analysis., Results: The findings distinguished subthemes within the concepts and uncovered their interrelations. The kinship relation, living situation and character of the dyadic relationship shaped informal carers' self-conception of the carer role. This influenced the integration of resources into the care arrangement. Conversely, the quantity and quality of informal and formal support resulted in a feeling of relief or overload in the carer role, that shaped the informal carers' way of living their dyadic relationship. The respective forming of the concepts had a significant impact with regard to the perceived stability or instability of the care situation in the examined care arrangements., Conclusions: This study provided valuable evidence for future research alignment and targeted refinement of the SoCA-Dem theory. Scholars should further explore the specifics of spousal versus parent-child-dyads to better understand the dyads' diverse strategies in the creation of stable home-based care arrangements. Furthermore, future research should focus on the complex dynamics of dyads, family networks, and service providers, and all actors' perspectives should be integrated in SoCA-Dem theory. Based on this growing knowledge base, innovative care interventions and structures should be developed to support people with dementia and their informal carers in better living and caring in the place of their choice., (© 2022. The Author(s).)

Background: Most persons with dementia live at home and want to stay there as long as possible. In most cases, informal carers such as spouses or children care for them. Together with other family members and professional carers, they form care arrangements to address the complex needs of persons with dementia. One major aim of informal carers is to keep the care arrangement stable. The middle-range theory of 'stability of home-based care arrangements for people living with dementia' (SoCA-Dem theory) offers a theory to understand what constitutes and influences the stability of home-based care arrangements. Based on this theory, the aim of this study was to (1) uncover the underlying structures of differences and commonalities of home-based care arrangements for persons living with dementia, (2) construct types of these care arrangements, and (3) compare these types with regard to their stability., Method: This is a secondary analysis of data from a convenience sample of n = 320 care arrangements for persons with dementia obtained in the observational DemNet-D study. Data were analysed using multiple correspondence analysis and hierarchical cluster analysis. Sociodemographic data and variables related to the structure of the care arrangement (D-IVA), burden of the informal carer (BICS-D), dementia severity (FAST), and quality of life of the person with dementia (QOL-AD) were included., Results: The multiple correspondence analysis identified 27 axes that explained the entire variance between all care arrangements. The two axes 'dementia and care trajectory' and 'structure of the dyadic relationship' best distinguished care arrangements from each other and together explained 27.10% of the variance. The subsequent cluster analysis identified four types of care arrangements. Two types included spouse-centred care arrangements, and two types included child-centred care arrangements at different phases of the dementia and care trajectory. The types differ with regard to their stability., Conclusion: The results highlight the heterogeneity and commonality of care arrangements for persons living with dementia. They contribute to a better understanding of informal dementia home care. Furthermore, the results can guide the development of tailored support for persons living with dementia and their caring families., (© 2022. The Author(s).)

Background: Most people with dementia and their informal carers live at home and strive to create a stable care situation for as long as possible. This preference of dyads is consistent with the global policy of ageing in place. Therefore, we aimed to develop a middle-range theory of stability guided by two research questions: How is stability of home-based care arrangements for people living with dementia constituted? What are the essential factors influencing stability?, Methods: Within the 'Stability of home-based care arrangements for people living with dementia' project (SoCA project) at the German Center for Neurodegenerative Diseases (DZNE), we conducted a meta-study on mixed research. The analytical steps of meta-data analysis, meta-method and meta-theory are merged in an integrative synthesis. Eligible publications were identified through systematic database searches (MEDLINE, CINAHL and PsycINFO; last searched on 3 January 2017), backward/forward citation tracking and snowballing. All publications were screened against predefined inclusion criteria and evaluated through a quality appraisal. The analytical approach was thematic synthesis., Results: 99 publications were included. The middle-range theory conceptualises stability as a complex phenomenon comprising three components including eight concepts that are dynamically inter-related. The conceptual model visualises: (1) the trajectory of the dementia care arrangement, which involves a cyclic process of change and balancing over time; (2) the characteristics of the care arrangement, including needs , the carer role , the dyadic relationship and resources ; and (3) the context, which is determined by society and culture and the respective healthcare system . The relevance of each concept in relation to stability changes over time. The forming of each concept is actively shaped by the informal carer., Discussion: This middle-range theory provides a thorough understanding of the stability of home-based care arrangements for people living with dementia and can be used to guide future research and practice., Other: This meta-study was funded by the DZNE and registered in PROSPERO (registration number CRD42016041727)., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Aims and Objectives: To describe nurses' experiences in caring for people with dementia in acute hospital settings., Background: Recent research suggests that nurses' experience in caring for people with dementia in acute hospitals is characterised by frustration, overall job dissatisfaction and feelings of powerlessness and guilt. Despite a growing body of knowledge concerning the care of people with dementia in acute care settings, it remains unclear how nurses in acute hospitals provide care for people with dementia and what general conditions characterise the nursing care provided to these patients., Design: A qualitative secondary analysis was conducted., Methods: Data were collected using audio-recorded focus group discussions with nurses in Germany and Austria. Overall, 12 focus group discussions, which were part of two larger research projects in Germany and Austria, were expanded into a qualitative secondary analysis (a content analysis)., Results: The findings show that nurses face great uncertainty in caring for people with dementia in acute hospital settings and that each nurse reacts in different ways to address this uncertainty. The results also underline that, even for nurses who provide some form of person-centred care, the hospital environment imposes several contextual constraints., Conclusions: Hospitals must minimise constraints to give every nurse the chance to perform person-centred care. Furthermore, it is important to sensitise nurses and give them sufficient training and education to enable them to care for people with dementia., Relevance to Clinical Practice: The results may contribute to a better understanding of the factors that support or constrain person-centred nursing care for people with dementia in acute hospitals., (© 2017 John Wiley & Sons Ltd.)

Objective: Individualized formulation-led interventions offer a promising approach for analyzing and managing challenging behaviors in people with dementia. Little is known about which individualized formulation-led interventions exist and what effects these interventions have on people with dementia and their caregivers. Therefore, the review aims to describe and examine existing interventions and to review their evidence., Methods: An integrative review of individualized formulation-led interventions for managing challenging behavior in people with dementia was conducted. PUBMED, PsycINFO [EBSCO] and CINAHL [EBSCO] databases were searched between February and April 2014 using key terms related to dementia, challenging behavior and individualized formulation- led interventions. The literature search was limited to German and English publications published from 1995. No limitations were placed on the type of paper, type of study design and stage of disease or setting. 37 relevant papers that met the inclusion criteria were included in this review., Results: The literature review provided 14 different individualized formulation-led interventions. The effects on people with dementia were diverse, as only half of the studies showed a significant reduction in behaviors compared with the control group. Family caregivers felt less upset about the challenging behavior and more confident in their ability to manage the behavior., Conclusion: There is a clear need for further research on individualized formulation-led interventions. The results of this review have the potential for developing interventions and for designing methodological robust evaluation studies that take into account the effectiveness of individualized formulation-led interventions on patient and caregiver outcomes.

The social inclusion of people with dementia (PwD) is recognised as a global goal of legislation, societal initiatives and service provision. Ensuring the social inclusion of PwD in these areas implies that its dimensions and domains are clear and unambiguous. However, the concept of social inclusion as it is currently used by researchers and practitioners is often vague or acts as a container concept for a variety of different approaches. This paper reports on an integrative review that analysed qualitative and quantitative studies on social inclusion and exclusion of PwD. It focused not only on the empirical results of the included studies but also on the theoretical embedding and methodological approaches to the concept of social inclusion and exclusion. We find that empirical studies on the social inclusion of PwD are scarce and largely characterised by a lack of or inconsistent conceptualisation. Against this background, the operationalisation of the concept and the assessment of the individual aspects of social inclusion with standardised instruments seem to be premature. Substantial theoretical and methodological work is needed to guide research on the social inclusion of PwD. The empirical results show that relationships with other people and being integrated into social networks are essential aspects of social inclusion. Likewise, the strategies and attitudes of caring persons can help to create or reinforce exclusion. [ABSTRACT FROM AUTHOR]

ABSTRACT Aim Design Result Conclusion Implications for the Profession and Patient Care Impact Reporting Method Patient and Public Contribution To investigate the professional dementia experts' understanding of a dementia‐friendly hospital to identify its characteristics.We used a qualitative design embedded in a case study. A total of 16 semi‐structured expert interviews were conducted with 17 professional dementia experts. Using inductive content analysis, the interviews were analysed in a participatory manner involving a group of researchers and dementia experts.We identified six characteristics of dementia‐friendly hospitals: Proud to be dementia‐friendly—That's what we want; Seeing the human being—Taking care of everyone; Having everyone on board—It's a collective task; Being professional—It takes more than being nice and kind; Rethinking the ‘running’ system—We have to change, not them; and Being part of the community—Thinking beyond the hospital.The concept of a dementia‐friendly hospital seems complex and requires a rethinking of the traditional hospital. For a conceptualisation, the involvement of people with dementia and their relatives is important to gain a comprehensive understanding.A dementia‐friendly hospital is characterised by professional care that comprises a safe, familiar and supportive environment, is prepared but also flexible, has everyone on board, and sees the human being. To become dementia‐friendly, individual interventions such as training courses can be a starting point. However, an overall concept is required that also includes components that contribute to successful implementation and a welcoming culture of people with dementia.Our findings on the perspective of professional dementia experts contribute to the conceptualisation of dementia‐friendly hospitals.We reported our study according to the COREQ checklist.The investigation of the perspective of professional dementia experts is one part of a larger study. In this overall DEMfriendlyHospital study, we interviewed professional dementia experts, people with dementia and their relatives and also involved them in a participatory manner in various stages of the research process. [ABSTRACT FROM AUTHOR]