Home-based care for people living with dementia at the end of life: the perspective of experts.

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.

Implementation of dementia care management in routine care (RoutineDeCM): a study protocol for process evaluation.

INTRODUCTION: Dementia care management is a complex intervention intended to support persons with dementia and their (caring) relatives in home-based care arrangements. Dementia care management was developed in the federal state of Mecklenburg-Western Pomerania in Germany and subsequently adapted for the German region of Siegen-Wittgenstein, where it will now be implemented. Four different service providers will carry out the implementation process. This study protocol describes the planned procedures for the parallel evaluation of the implementation process. METHODS AND ANALYSIS: A multiple embedded case study design was chosen for the planned process evaluation. Data collection and analysis will be informed by the Consolidated Framework for Implementation Research, the Expert Recommendations for Implementing Change, the Medical Research Council framework for conducting process evaluations of complex interventions and the Taxonomy of Outcomes for Implementation Research. Information (qualitative and quantitative) will be collected from all stakeholders involved in the dementia care management intervention (ie, dementia care managers, general practitioners, people with dementia). ETHICS AND DISSEMINATION: The process evaluation is conducted in accordance with the Declaration of Helsinki, the recommendations on good scientific practice, the research ethics principles of the Code of Ethics of the German Society of Nursing Science, and on the basis of ethical approval from the Clinical Ethics Committee of University Medicine Greifswald (BB 110/22). The results of the process evaluation will be disseminated through reports to the funders of the study and also as a summary of recommendations for the sustainable implementation of dementia care management for future implementers. We also plan to publish the results of this process evaluation in an international peer-reviewed journal. TRIAL REGISTRATION NUMBER: NCT05529277, Registered 7 September 2022, https://beta. CLINICALTRIALS: gov/study/NCT05529277.

Methods for the involvement of people living with dementia in research focused on the built environment: a protocol for a scoping review.

INTRODUCTION: The positive influence of a well-designed built environment in dementia-specific care has been known for several years. Many studies focusing on the built environment have captured the perspectives of people living with dementia. However, it remains unclear to what degree and with which methods these individuals have been actively involved in research especially when attempting to understand their perspective. The planned scoping review aims to (1) synthesise methods and results from research about the built environment according to active involvement of people living with dementia and (2) describe facilitators and barriers to this active involvement to capture their perspectives in research. METHODS AND ANALYSIS: We will use four search strategies: (1) searches in academic databases MEDLINE via PubMed, CINAHL and APA PsycINFO via EBSCO, and Scopus; (2) grey literature searches via Google Scholar; (3) handsearches of non-academic environmental planning and design journals and (4) identifying other publications of key authors in the field. Additionally, backward and forward citation tracking will be performed via reference lists and Google Scholar, respectively. Relevant literature published between 2013 and 2023 will be identified for data extraction and synthesis. One researcher will perform each strategy. Title-abstract/full text-screening will be conducted using Covidence by two researchers. Results will be displayed in a table and through figures illustrating identified facilitators and barriers. ETHICS AND DISSEMINATION: We raised no ethical concerns for the planned scoping review. We will prepare the findings including the identified barriers with long-term care practitioners from our network to identify how changes in practical application methods can be addressed. This dialogue can serve as a basis for including people living with dementia to discuss highlighted barriers when researching their perspectives on the built environment. The scoping review results will be reported in both academic and non-academic journals and at academic conferences.

How and why educational interventions work to increase knowledge of delirium among healthcare professionals in nursing homes: a protocol for a realist review.

BACKGROUND: Delirium is a neuropathological condition that impairs cognitive performance, attention and consciousness and can be potentially life-threatening. Nursing home residents are particularly vulnerable to developing delirium, but research thus far tends to focus on the acute hospital setting. Healthcare professionals (HCPs) working in nursing homes seem to be little aware of delirium. To improve healthcare for affected or at-risk individuals, increasing knowledge among HCPs is highly relevant. Using the realist review method helps to understand how and why an educational intervention for HCPs on delirium in nursing homes works. METHODS AND ANALYSIS: In accordance with the Realist And Meta-narrative Evidence Syntheses: Evolving Standards publication standards for realist syntheses, the review process will include the following five steps: (1) search strategy and literature review; (2) study selection and assessment; (3) data extraction; (4) data synthesis and (5) development of an initial programme theory. The literature search will be conducted in the databases Medline (PubMed), CINAHL (Ebsco), Scopus, Web of Science, GeroLit and Carelit. Additional focuses are on snowballing techniques, hand research and grey literature. Studies of any design will be included to develop the initial programme theory. The literature will be selected by two researchers independently. In addition, the experiences of HCPs from nursing homes will be reflected in group discussions. To this end, Context-Mechanism-Outcome configurations (CMOcs) will be established to develop an initial programme theory. ETHICS AND DISSEMINATION: The results will be disseminated within the scientific community. For this purpose, presentations at scientific conferences as well as publications in peer-reviewed journals are scheduled. In the next step, the CMOcs could serve for the development of a complex educational intervention to increase the knowledge of HCPs on delirium in nursing homes. REGISTRATION DETAILS: This protocol has been registered at Open Science Framework (https://doi.org/10.17605/OSF.IO/HTFU4).

The dyadic relationship of family carers and people living with dementia - an umbrella review.

OBJECTIVES: The dyadic relationship of people living with dementia and their family carers is highly relevant when considering the stability of home-based care arrangements. There is a solid body of research that covers issues related to dyadic relationships. However, a synthesis of qualitative research is missing. Therefore, the aim of this review is to give an overview of the dyadic relationship, with the leading research question of what influences the dyadic relationship and how it can be maintained during the trajectory of the disease. METHODS: We performed an umbrella review of qualitative literature on the basis of thematic synthesis and used the SoCA-Dem theory as a theoretical framework. Literature searches in the databases PubMed (MEDLINE), CINAHL, Scopus, and PsycInfo were performed from July to September 2020, additional papers were included until September 2022. We searched without timeframe restrictions and considered publications in English or German. RESULTS: After a systematic database search, resulting in 1325 records, we included 12 reviews. Five analytical themes and 11 subthemes were identified. The analytical themes were 'change in the relationship', 'activities to maintain the relationship', 'continued togetherness', 'home as a place for enacting relationship', and 'influencing factors'. CONCLUSION: The dyadic relationship is a complex and multifaceted phenomenon. It is characterized by family carers' attempts to continue togetherness using different strategies and is mainly influenced by the quality of the premorbid relationship and the mindset of the family carer.

Theory-based evaluation and programme theories in nursing: A discussion on the occasion of the updated Medical Research Council (MRC) Framework.

Developing and evaluating health interventions for the benefit of patients is notoriously difficult. This also applies to the discipline of nursing, owing to the complexity of nursing interventions. Following significant revision, the updated guidance of the Medical Research Council (MRC) adopts a pluralistic view to intervention development and evaluation, including a theory-based perspective. This perspective promotes the use of program theory, aiming to understand how and under what circumstances interventions lead to change. In this discussion paper, we reflect the recommended use of program theory in the context of evaluation studies addressing complex nursing interventions. First, we review the literature by investigating the question whether and how evaluation studies targeting complex interventions used theory and to what extent program theories may contribute to enhance the theoretical foundations of intervention studies in nursing. Second, we illustrate the nature of theory-based evaluation and program theories. Third, we argue how this may impact theory building in nursing in general. We finish by discussing which resources, skills and competencies are necessary to fulfill the demanding task of undertaking theory-based evaluations. We caution against an oversimplified interpretation of the updated MRC guidance regarding the theory-based perspective, e.g. by using simple linear logic models, rather than articulating program theories. Instead, we encourage researchers to embrace the corresponding methodology, i.e. theory-based evaluation. With the prevailing perspective of knowledge production in crisis, we might be on the verge of a paradigm shift in health intervention research. Viewed through this lens, the updated MRC guidance could lead to a renewed understanding of what constitutes useful knowledge in nursing. This may facilitate knowledge production and, thereby, contribute to improve nursing practice for the benefit of the patient. TWEETABLE ABSTRACT: The latest iteration of the MRC Framework for developing and evaluating complex healthcare interventions could lead to a renewed understanding of what constitutes useful knowledge for nursing.

[Do guidelines for care practice address the stability of home-based care arrangements for people with dementia?-A document analysis]. / Adressieren Handlungsempfehlungen der Versorgungspraxis die Stabilität von häuslichen Versorgungsarrangements von Menschen mit Demenz? ­ Eine Dokumentenanalyse.

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.

Core elements and potential of nurse-led care models in residential long-term care: A scoping review.

AIMS AND OBJECTIVE: To identify and summarise core elements, resident-, staff- and process-related outcomes and challenges of nurse-led care models in residential long-term care. BACKGROUND: Due to demographic trends, the complexity of residential long-term care has increased. To address this complexity, the implementation of nurse-led care models has been recommended. DESIGN: Scoping review. METHODS: A systematic search was conducted of English and German articles in CINAHL via EBSCO, MEDLINE via PubMed, Cochrane Library and Scopus. Forward and backward citation tracking via reference lists and Google Scholar supplemented the search. The final update was made on 19 January 2021. To draw conclusions about the potential of nurse-led care models, evaluation studies of the described models for residents in nursing homes were included. Full texts were independently screened and assessed for methodological quality. Data were extracted and summarised in tables and synthesised for analysis. The core elements of the models were described using the Sustainable intEgrated chronic care modeLs for multimorbidity: delivery, FInancing and performancE (SELFIE) framework. The review followed the PRISMA-ScR guideline. RESULTS: We included 13 studies of 12 nurse-led care models. The different models comprised many of the core elements suggested in the SELFIE framework, particularly in the components service delivery, workforce, and leadership and governance. The studies reported a broad range of resident-, staff- and process-related outcomes and challenges considered relevant to the success of the models. CONCLUSIONS: Studies evaluating nurse-led care models in nursing homes are limited and of moderate quality. This review demonstrates that nurse-led care models include many elements for care coordination and could improve resident-, staff- and process-related outcomes. RELEVANCE TO CLINICAL PRACTICE: This review highlights that nurse-led care models share common core elements despite their heterogeneity. It also shows that highly qualified nurses in nurse-led care models can advance nursing practice in nursing homes.

[Regional Health Care Networks in Germany: Characteristics and Financing Illustrated with Dementia Care Networks]. / Regionale Gesundheitsnetzwerke in Deutschland: Charakteristik und Finanzierung am Beispiel regionaler Demenznetzwerke.

OBJECTIVES: To describe the characteristics, financing structures and challenges of regional dementia care networks and the use of regional financial network support according to § 45c para. 9 SGB XI. METHODS: The analysis was based on data from 120 dementia networks that provided information on the network characteristics (location, year of foundation, goals, organizational, personnel and financing structure), the challenges and the use of regional network funding according to § 45c Para. 9 SGB XI. Differences in the organizational, personnel and financing structure depending on the network characteristics were analyzed using t-Tests and ANOVA tests. The use of regional network funding (§ 45c Para. 9) were presented descriptively and discussed against the background of the planned amendment for 2022. RESULTS: The majority of networks were established between 2011 and 2015. Most networks had educational and care goals and, on average, 28 stakeholders. Medically-associated and longer-established networks and networks with a legal form had significantly more network partners, persons actively involved in the work of the network and funding sources. The linking of stakeholders and the funding were seen as the most significant challenges. Every tenth network received regional network funding (§45c para. 9) but 28% decided not to receive funding. For most networks (50%), the funding was still unknown. CONCLUSION: Regional dementia networks are very heterogeneously structured. Certain factors can significantly affect the number of partners and funding sources and should, therefore, be considered. Up to now, only one network per region could receive the maximum amount (€20,000) of funding according to §45c para. 9, which limits the usability of this funding, especially in densely populated regions. The amendment now increases the number of networks to be funded within one region and the funding level. It remains to be seen to what extent this amendment will increase the use of the regional network funding.

Adapting the Australian Environmental Assessment Tool-High Care (EAT-HC): Experiences and Practical Implications From Germany, Japan, and Singapore.

BACKGROUND: Assessing the built environment in nursing homes is part of several established instruments. Measurements are primarily published in English, so there is a need for cross-cultural adaptation to be able to use them in other countries. This procedure should be carried out alongside translation guidelines to ensure successful adaptation not only for assessments that capture complex constructs, such as the built environment, but also for assessments to be applied in healthcare in general. OBJECTIVE: This article presents different approaches to adopt the Australian Environmental Assessment Tool-High Care (EAT-HC) based on the World Health Organization (WHO) guidelines for instrument translation. The comparison of these processes should provide implications for further adaptations of the instrument. METHODS: The adaptation processes carried out in Germany, Japan, and Singapore were compared using thematic analysis. Steps taken to achieve linguistic validation and to adopt the tool were analyzed qualitatively in the context of overarching needs for adjustment. RESULTS: Every perspective adapted the WHO guidelines for their respective purposes of applying the EAT-HC. The order of steps varied, but elements to validate the results with the instruments' creators and to ensure validity were included in all three countries. For items that might be challenging, we detected possible reasons that might help future adaptors manage this process more efficiently. CONCLUSION: The EAT-HC benefits from adaptation alongside the WHO guidelines in terms of enhancing the quality of translation and feasibility of application. Individual supplementary adaptation steps allow the identification of culture-specific needs for application in other countries.

Measuring person-centred care in german nursing homes - exploring the construct validity of the Dementia Policy Questionnaire: a cross-sectional study of a secondary data set.

BACKGROUND: To ensure the sustainable implementation of dementia-specific person-centred care (PCC) in nursing homes, internal policies are crucial. The preliminary German Dementia Policy Questionnaire, which features 19 dichotomous items, assesses the existence of and evaluates these policies. This article reports the results of an exploration of the construct validity of the preliminary Dementia Policy Questionnaire. METHODS: This study is a cross-sectional study that references a secondary data set drawn from a national survey study of a randomized, stratified sample of 134 nursing homes in Germany. To explore the construct validity of the preliminary Dementia Policy Questionnaire, we conducted an adjusted multiple correspondence analysis of the pretested 19-item assessment. We included data assessed using the preliminary Dementia Policy Questionnaire from 134 care units associated with 134 nursing homes; these data were collected via telephone interviews with nursing home administrators or their representatives. RESULTS: Two items assessing visitor regulations and regulations regarding the inclusion of residents in staff selection were less frequent and were therefore excluded from the adjusted multiple correspondence analysis. In total, nine items were assigned to two dimensions. The items assigned to the first dimension assess existing regulations for PCC as well as existing regulations regarding the involvement of the resident, relatives and the multiprofessional team in the collection of information concerning preferences, case conferences or decision making. The items assigned to the second dimension assess existing regulations regarding the systematic assessment of resident preferences and their requirements. CONCLUSION: The study produces exploratory evidence concerning the preliminary Dementia Policy Questionnaire. Since the dimensions of the items included in this questionnaire cannot be conceptualized clearly, the instrument in its current state requires further development.

Dyadic relationship, carer role, and resources: a theory-driven thematic analysis of interviews with informal carers focusing on the stability of home-based care arrangements for people living with dementia.

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.

Differences and commonalities of home-based care arrangements for persons living with dementia in Germany - a theory-driven development of types using multiple correspondence analysis and hierarchical cluster analysis.

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.

Feasibility, Interrater Reliability and Internal Consistency of the German Environmental Audit Tool (G-EAT).

Dementia-specific environmental design has the potential to positively influence capabilities for daily living and quality of life in people with dementia living in nursing homes. To date, no reliable instrument exists for systematically assessing the adequacy of these built environments in Germany. This study aimed to test the adapted version of the Environmental Audit Tool-High Care (EAT-HC)-the German Environmental Audit Tool (G-EAT)-with regard to its feasibility, interrater reliability and internal consistency. The G-EAT was applied as a paper-pencil version in the German setting; intraclass correlation coefficients at the subscale level ranged from 0.662 (III) to 0.869 (IV), and 42% of the items showed at least substantial agreement (Cohen's kappa ≥ 0.60). The results indicate the need to develop supplementary material in a manual that illustrates the meaning of the items and practical implications regarding dementia-specific environmental design. Furthermore, the intersectionality of built and physical environments must be considered when interpreting G-EAT results in future research and applications to residential long-term care practice.

German Translation, Linguistic Validation, and Cultural Adaptation of the Environmental Audit Tool-High Care.

BACKGROUND: In dementia-specific care, the design of the environment is regarded as an influential element in the support and maintenance of skills and can improve the quality of life of residents. To date, there is no valid instrument in the German-speaking countries with which the quality of the physical environment in residential long-term care facilities can be systematically assessed. OBJECTIVE: To report the translation, linguistic validation, cultural adaptation, and content validity evaluation of the Australian Environmental Audit Tool-High Care in preparation for use in German nursing homes. METHOD: The procedure was guided by an adapted multistep process of the World Health Organization (1998) and included focus groups involving potential users of the new tool such as scientific experts and healthcare professionals (n = 40). Content validity indices were calculated following a two-step expert survey. RESULTS: The final draft versions of the German Environmental Audit Tool (G-EAT) included 74 and 77 items, for non-secured units and secure units, respectively, divided into 10 key design principles according to the Australian original. The evaluation of content validity showed that cultural differences existed in several items. CONCLUSIONS: The G-EAT provides the means for conducting a valid assessment of the environmental quality of people with dementia in German nursing homes. However, its usability in healthcare research must be preceded by testing its interrater reliability.

Context, mechanisms and outcomes of dementia special care units: An initial programme theory based on realist methodology.

BACKGROUND: Dementia special care units represent a widely implemented care model in nursing homes. Their benefits must be thoroughly evaluated given the risk of exclusion and stigma. The aim of this study is to present an initial programme theory that follows the principles of realist methodology. The theory development was guided by the question of the mechanisms at play in the context of dementia special care units to produce or influence outcomes of interest in people with dementia. METHODS: The initial programme theory is based on qualitative interviews with dementia special care stakeholders in Germany and a realist review of complex interventions in dementia special care units. The interviews were analysed using content analysis techniques. For the realist review, a systematic literature search was conducted in four scientific databases; studies were appraised for quality and relevance. All data were analysed independently by two researchers. A realist informed logic model was developed, and context-mechanism-outcome (CMO) configurations were described. RESULTS: We reviewed 16 empirical studies and interviewed 16 stakeholders. In the interviews, contextual factors at the system, organisation and individual levels that influence the provision of care in dementia special care units were discussed. The interviewees described the following four interventions typical of dementia special care units: adaptation to the environment, family and public involvement, provision of activities and behaviour management. With exception of family and public involvement, these interventions were the focus of the reviewed studies. The outcomes of interest of stakeholders include responsive behaviour and quality of life, which were also investigated in the empirical studies. By combining data from interviews and a realist review, we framed three CMO configurations relevant to environment, activity, and behaviour management. DISCUSSION: As important contextual factors of dementia special care units, we discuss the transparency of policies to regulate dementia care, segregation and admission policies, purposeful recruitment and education of staff and a good fit between residents and their environment.

Relationship between the severity of agitation and quality of life in residents with dementia living in German nursing homes - a secondary data analysis.

BACKGROUND: Severe agitation and its relation to single dimensions of quality of life are not well understood. The aim of this study was to gain more knowledge about severe agitation and to examine the relationships between the severity of agitation and single dimensions of quality of life among residents with dementia living in German nursing homes. METHODS: This exploratory secondary analysis included data from 1947 residents of 66 German nursing homes from the DemenzMonitor study. The construct of agitation was defined as a composite score of the items agitation/aggression, irritability/lability and disinhibition from the Neuropsychiatric Inventory Questionnaire (NPI-Q); the resident was classified as severely agitated if at least one of these symptoms was rated as 'severe'. The single dimensions of quality of life were measured with the short version of the QUALIDEM instrument. To avoid selection bias, two controls with mild or no agitation were selected for each resident with severe agitation using propensity score matching. Mixed linear regression models were then generated to determine the differences in the dimensions of quality of life for the severity of agitation and the defining items. RESULTS: For four out of five dimensions of quality of life of the short version of QUALIDEM, residents with severe agitation had significantly lower values than residents without severe agitation. Converted to scale size, the greatest difference between both groups was found in the dimension social isolation with 23.0% (-2.07 (95% CI: -2.57, -1.57)). Further differences were found in the dimensions restless tense behaviour with 16.9% (-1.52 (95% CI: -2.04, -1.00)), positive affect with 14.0% (-1.68 (95% CI: -2.28, -1.09)) and social relations with 12.4% (-1.12 (95% CI: -1.54, -0.71)). CONCLUSIONS: Severe agitation is a relevant phenomenon among nursing home residents with dementia and is associated with lower values of quality of life in the dimensions social isolation, restless tense behaviour, positive affect and social relations from the QUALIDEM instrument. Therefore, more attention should be paid to severe agitation in nursing practice and research. Moreover, care strategies used to reduce severe agitation should be considered in terms of their impact on the dimensions of quality of life.

Towards a middle-range theory of 'Stability of home-based care arrangements for people living with dementia' (SoCA-Dem): findings from a meta-study on mixed research.

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).

Feasibility of a mobility programme for people with dementia in the respite care setting: results of the DESKK study.

BACKGROUND: Caring for people with dementia (PwD) is often challenging for caregiving relatives. Respite care (RC) is a commonly used short-term inpatient service. The provision of RC can serve as a link between home care and institutional care and can help to stabilize the care provided at home. During RC, the everyday functional skills of PwD can be improved or stabilized through systematic mobility training. However, no specific mobility programme exists for this setting. The aim of the DESKK study was to develop and test a mobility training programme for PwD in the RC setting in Germany. METHODS: A quasi-experimental pilot study was conducted in a specialized RC centre for PwD. Qualitative and quantitative data were collected and analysed using a mixed methods design. RESULTS: The DESKK mobility programme may be introduced in the RC setting depending on the required time and professional resources. The mobility programme had a high acceptance rate among the staff involved. Ongoing documentation of the mobility exercises were challenging. During their stay (2-4 weeks), the physical function level of the included PwD (n = 20) increased regarding leg strength, gross motor coordination, fine coordination of the fingers and hand strength. CONCLUSIONS: The DESKK mobility programme showed a high acceptance rate by the staff and was usable in daily care routine for the most part. These aspects indicate that the programme has the potential to be successfully implemented in the RC setting. The DESKK concept is described in the form of a practice-friendly website to facilitate its use in clinical practice after its successful evaluation.