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Zusammenfassung Hintergrund Die Begleitung von Menschen mit Demenz (MmD) in der Häuslichkeit übernehmen überwiegend Angehörige mit der Intention, die Versorgung so lange wie möglich zu Hause aufrechtzuerhalten. Im DZNE-SoCA-Projekt wurde eine Theorie mittlerer Reichweite zur Stabilität von häuslichen Versorgungsarrangements für MmD (SoCA-Dem-Theorie) entwickelt, um das komplexe Phänomen der Stabilität besser zu verstehen, einen theoretischen Bezugsrahmen für weitere Forschung anzubieten und Orientierung für die (Weiter‑)Entwicklung von Versorgungsstrukturen zu schaffen. Ziel der Arbeit Das Ziel dieser Teilstudie des SoCA-Projektes ist es zu prüfen, ob die SoCA-Dem-Theorie in der deutschen Versorgungspraxis handlungsleitend für die Beratung und Begleitung mit versorgenden Angehörigen (vA) von MmD sein kann. Material und Methode Es wurden 2 Handlungsempfehlungen für professionelle Akteure im Gesundheitswesen – der „Qualitätsrahmen für Beratung in der Pflege“ des Zentrums für Qualität in der Pflege (ZQP) und die S3-Leitlinie „Pflegende Angehörige von Erwachsenen“ der Deutschen Gesellschaft für Allgemeinmedizin und Familienmedizin e. V. (DEGAM) – inhaltsanalytisch ausgewertet, um Bezugspunkte zur SoCA-Dem-Theorie herauszuarbeiten. Ergebnisse Die meisten Konzepte, die die Stabilität der häuslichen Versorgung beeinflussen, werden in beiden Handlungsempfehlungen aufgegriffen. Die SoCA-Dem-Theorie verdeutlicht die Bedeutung des Zusammenspiels der verschiedenen Konzepte; in den Handlungsempfehlungen bleiben diese dynamischen Verbindungen unklar. Schlussfolgerung Die SoCA-Dem-Theorie ist anschlussfähig an den deutschen Versorgungskontext und kann zukünftig dahingehend unterstützen, den Blick von einer eher belastungsorientierten Sicht auf Versorgung hin zu einer umfassenden Betrachtung der Situation zu wenden.

Most persons with dementia live at home and are cared for by family carers and professional carers. Together, they form care arrangements to address the needs of persons with dementia. The aim of this study is to (1) uncover the underlying structures 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. In this secondary analysis, data from 320 care arrangements for persons with dementia are analysed using multiple correspondence analysis and hierarchical cluster analysis. The multiple correspondence analysis identified 27 axis that explained the entire variance between all care arrangements. 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.

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.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.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.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.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.HINTERGRUND: Die Begleitung von Menschen mit Demenz (MmD) in der Häuslichkeit übernehmen überwiegend Angehörige mit der Intention, die Versorgung so lange wie möglich zu Hause aufrechtzuerhalten. Im DZNE-SoCA-Projekt wurde eine Theorie mittlerer Reichweite zur Stabilität von häuslichen Versorgungsarrangements für MmD (SoCA-Dem-Theorie) entwickelt, um das komplexe Phänomen der Stabilität besser zu verstehen, einen theoretischen Bezugsrahmen für weitere Forschung anzubieten und Orientierung für die (Weiter‑)Entwicklung von Versorgungsstrukturen zu schaffen.Das Ziel dieser Teilstudie des SoCA-Projektes ist es zu prüfen, ob die SoCA-Dem-Theorie in der deutschen Versorgungspraxis handlungsleitend für die Beratung und Begleitung mit versorgenden Angehörigen (vA) von MmD sein kann.Es wurden 2 Handlungsempfehlungen für professionelle Akteure im Gesundheitswesen – der „Qualitätsrahmen für Beratung in der Pflege“ des Zentrums für Qualität in der Pflege (ZQP) und die S3-Leitlinie „Pflegende Angehörige von Erwachsenen“ der Deutschen Gesellschaft für Allgemeinmedizin und Familienmedizin e. V. (DEGAM) – inhaltsanalytisch ausgewertet, um Bezugspunkte zur SoCA-Dem-Theorie herauszuarbeiten.Die meisten Konzepte, die die Stabilität der häuslichen Versorgung beeinflussen, werden in beiden Handlungsempfehlungen aufgegriffen. Die SoCA-Dem-Theorie verdeutlicht die Bedeutung des Zusammenspiels der verschiedenen Konzepte; in den Handlungsempfehlungen bleiben diese dynamischen Verbindungen unklar.Die SoCA-Dem-Theorie ist anschlussfähig an den deutschen Versorgungskontext und kann zukünftig dahingehend unterstützen, den Blick von einer eher belastungsorientierten Sicht auf Versorgung hin zu einer umfassenden Betrachtung der Situation zu wenden.

BackgroundMost 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?MethodsWithin 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.Results99 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.DiscussionThis 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.OtherThis meta-study was funded by the DZNE and registered in PROSPERO (registration number CRD42016041727).

Low-threshold support services are provided within the basket of services of German long-term care insurance as a part of respite care to support family carers and people with dementia. This study investigates various stakeholders’ (providers, coordinators, volunteers, family carers and people with dementia) perspectives on low-threshold support service regarding its organisation and conceptualisation as well as how stakeholders and users value low-threshold support service using a qualitative approach. Twelve guided interviews and group discussions were conducted with 31 participants. Organisation and conceptualisation are characterised by the lowness of the service thresholds, which is perceived to be quick and simple forms of support with no user requirements. Multiple barriers such as the challenging behaviour of people with dementia and their initial refusal as well as their holding low-threshold support service in low esteem can hinder the utilisation of these services. Low-threshold support service within the scope of the long-term care insurance law can be separated into two types: low-cost (non-professional) services and high-cost services with comprehensive training for ‘employed’ volunteers (professional). Both types are constantly developing within the landscape of the German long-term care system, and low-threshold support service appears to be adapted to diverse needs. Therefore, it is important to avoid replacing non-professional services with professional services.

Ziel der Studie: Ziel der Studie war es, die subjektive Einschatzung der Betreuungskrafte in niedrigschwelligen Betreuungsangeboten fur Menschen mit Demenz zu ihrem Engagement unter Berucksichtigung des Anstellungsstatus zu untersuchen. Des Weiteren wurde ihre Bewertung dieser Angebotsart allgemein erfasst. Methodik: In einer explorativen Querschnittstudie wurden standardisierte Fragebogen in 2 Regionen Nordrhein-Westfalens eingesetzt und die Ergebnisse deskriptiv ausgewertet. Ergebnisse: Der Anstellungsstatus der Betreuungskrafte war unterschiedlich. So war die Halfte der 92 Befragten rein ehrenamtlich engagiert, wahrend die anderen geringfugig beschaftigt oder vom Trager des Angebotes angestellt waren. Sie suchten uberwiegend eine sinnvolle sowie erfullende Tatigkeit, profitierten personlich stark durch ihre Tatigkeit und zeigten ein hohes Engagement. Bei der Einschatzung zur Gestaltung der Angebote wurden die Aspekte, die das Angebot allgemein betreffen, organisatorischer Natur sind oder sich auf das Verhalten der Betreuungskrafte beziehen, als wichtig bewertet. Der wichtigste Aspekt fur alle Betreuungskrafte war die Beachtung der Bedurfnisse der Menschen mit Demenz. Der Anstellungsstatus spielt bei der Einschatzung dieser Aspekte kaum eine Rolle. Schlussfolgerung: Die Betreuungskrafte zeigen ein hohes Engagement. Hinsichtlich des Anstellungsstatus von Betreuungskraften lassen sich die Anbieter der Angebote in 2 Gruppen unterteilen. Die eine Gruppe bleibt bei dem rein ehrenamtlichen Engagement der Betreuungskrafte, wahrend die andere Gruppe durch den Abschluss von Anstellungsvertragen mit den Betreuungskraften eine kontinuierlichere Betreuung fur die Betroffenen anbieten und sicherstellen kann.

Niedrigschwellige Betreuungsangebote sind eine Möglichkeit, durch eine stundenweise Betreuung von Personen mit Demenz (PmD), pflegende Angehörige zu entlasten. Ziel der Studie ist es, die Aspekte von Niedrigschwelligkeit (Zugang, Flexibilität, Erreichbarkeit, Kostengünstigkeit) sowie die inhaltlichen und organisatorischen Aspekte niedrigschwelliger Angebote aus Sicht der pflegenden Angehörigen zu untersuchen. In einer explorativen Querschnittstudie wurde die Einschätzung von Angehörigen von PmD, welche ein niedrigschwelliges Betreuungsangebot in Anspruch nehmen, zu diesen Angeboten mittels standardisierter Fragebögen in zwei Regionen Nordrhein-Westfalens erhoben und deskriptiv ausgewertet. Die Ergebnisse zeigen, dass für die 53 befragten Angehörigen die inhaltliche Gestaltung der Betreuung v. a. mit Blick auf das Wohlbefinden der PmD von Bedeutung ist, während organisatorische Aspekte sowie die Niedrigschwelligkeit der Angebote als weniger wichtig empfunden werden. Die subjektiv eingeschätzte Belastung der pflegenden Angehörigen spielt dabei keine Rolle. Für die Entscheidung der pflegenden Angehörigen zur Inanspruchnahme scheint von Bedeutung zu sein, dass der Betreuungsschwerpunkt auf den Bedürfnissen der Menschen mit Demenz liegt, und dieser transparent dargestellt wird.

In Germany hourly care for people with dementia and relief for family caregivers are often delivered through social care groups. The existing literature describes these groups from the perspective of professionals or family caregivers, with little involvement of people with dementia. This qualitative study is the first step in exploring the experiences of people with dementia in social care groups. Five persons suffering from dementia in one group were interviewed and additionally observed with DCM in three group sessions. The interview transcripts were coded open and axial according to Grounded Theory. The DCM data was analysed descriptive. The main phenomena in the interviews are ‘familiar community’ and ‘personal meaning’. The DCM results show that people with lower cognitive function are excluded from most activities, whereas more staff attention causes better well-being. To create a ‘familiar community’ in a social care group, staff skills and knowledge are required.

IntroductionWorldwide, most people with dementia live at home and are cared for by informal carers. During the dementia care trajectory, creating and maintaining a stable care situation is a guiding principle of informal carers and a desirable outcome of contemporary healthcare policies. However, though there is an extensive body of research focusing on the course of dementia care trajectories, it remains unclear how stability of home-based care arrangements is constituted and what are the essential factors that influence this stability. This paper outlines a protocol of a systematic review that aims to address these gaps in knowledge.Methods and analysisTo theorise the complex phenomenon of stability of home-based care arrangements for people with dementia, we will conduct a meta-study. Meta-studies include three analytical components (meta-data analysis, meta-method and meta-theory) that are combined and finally culminate in an integrative knowledge synthesis. Originally, meta-study was designed to include qualitative studies only. To capture relevant contributions to our target phenomenon from all types of evidence, we will extend the original methodology and apply it to studies with qualitative, quantitative and mixed-methods designs and to (systematic) reviews. Eligible studies will be identified by systematic database searches (PubMed, CINAHL and PsycINFO), backward/forward citation tracking, snowballing and theoretical sampling. All identified studies will be screened against predefined inclusion criteria. The main analytical approach for all analyses is thematic synthesis. The meta-study will generate a more comprehensive understanding of dementia care trajectories and will be used to identify research gaps, develop future research questions and define relevant outcomes.DisseminationThe findings of the meta-study will be published in a series of articles in peer-reviewed scientific journals and will be presented at national and international scientific conferences.PROSPERO registration numberCRD42016041727.

Worldwide, most people with dementia live at home. The stability of home-based care arrangements is discussed as a crucial factor in health care policy and dementia research. For informal carers maintaining stability is an ever-changing challenge throughout the caring trajectory. We will be presenting a currently conducted synthesis of quantitative and qualitative studies with the primary research question: What constitutes and influences stability of home-based care arrangements for people living with dementia? The methodology of meta-study will be used (synthesis of meta-data-analysis, meta-method, meta-theory). For details see PROSPERO registration number CRD42016041727. First results show that the dynamic nature of stability as a continuous process is a broadly overlooked phenomenon and there is a lack of studies with a trajectory perspective. The majority of quantitative studies focuses on risk factors for institutionalization, but fails to comprehend the dynamics behind it. Qualitative research aims at understanding informal caregiving as a social construction, but pays little attention to its direct impact on whether a care arrangement can be maintained or not. From this synthesis a lot can be learned about how the phenomenon of stability has been understood and approached in dementia research within the last decades. The final results will help to define research gaps that have been overlooked in the past and to develop research questions and study designs that will be able to meet the methodological and theoretical requirements of this complex phenomenon. Finally, they will provide an empirical and theoretical basis to develop stability promoting interventions.

Low-threshold support services are one possibility to relieve family carers with an hourly care for people with dementia. The aim of the study is to invest aspects of low-thresholdness (accessibility, flexibility, reachability, cheapness) with regards to content and to organisation. In an explorative cross-sectional study we collected the estimation according to low-threshold support services of family carers of people with dementia using those services in two regions of North-Rhine-Westphalia (Germany). The analysis was descriptive. The results show, that the 53 family carers estimate the aspects with regards to content mainly with focus on the well-being of the people with dementia as crucial, meanwhile the organisational aspects and the low-thresholdness were less important. Carers' burden was no object. For the family carers and the decision to utilise a low-threshold support service it seems to be import to have a transparent description of the care with a focus on the needs and well-being of the person with dementia.Niedrigschwellige Betreuungsangebote sind eine Möglichkeit, durch eine stundenweise Betreuung von Personen mit Demenz (PmD), pflegende Angehörige zu entlasten. Ziel der Studie ist es, die Aspekte von Niedrigschwelligkeit (Zugang, Flexibilität, Erreichbarkeit, Kostengünstigkeit) sowie die inhaltlichen und organisatorischen Aspekte niedrigschwelliger Angebote aus Sicht der pflegenden Angehörigen zu untersuchen. In einer explorativen Querschnittstudie wurde die Einschätzung von Angehörigen von PmD, welche ein niedrigschwelliges Betreuungsangebot in Anspruch nehmen, zu diesen Angeboten mittels standardisierter Fragebögen in zwei Regionen Nordrhein-Westfalens erhoben und deskriptiv ausgewertet. Die Ergebnisse zeigen, dass für die 53 befragten Angehörigen die inhaltliche Gestaltung der Betreuung v. a. mit Blick auf das Wohlbefinden der PmD von Bedeutung ist, während organisatorische Aspekte sowie die Niedrigschwelligkeit der Angebote als weniger wichtig empfunden werden. Die subjektiv eingeschätzte Belastung der pflegenden Angehörigen spielt dabei keine Rolle. Für die Entscheidung der pflegenden Angehörigen zur Inanspruchnahme scheint von Bedeutung zu sein, dass der Betreuungsschwerpunkt auf den Bedürfnissen der Menschen mit Demenz liegt, und dieser transparent dargestellt wird.

Social care groups for people with dementia areone way to relieve family caregivers and to activate individuals with dementia. This study aimed to describe one social care group and investigate the well-being of the groups members. The research question therefore was: What are people with dementia doing and how do they feel in a social care group? In this descriptive observation study we observed three group sessions in one social care group with five members in North Rhine-Westphalia (Germany) using Dementia Care Mapping (DCM). The results show that there was a special course of action fixed by meals, welcoming and farewell. The behaviour and well-being varied. Leisure like doing handicraft and interaction were depicted as main activities. The well-being was high, if participants had energetic activities and the course of action of the different group members was similar. Interestingly one person was excluded from almost all activities. It is important for staff to know the constellation of the group and to include all visitors.

Background Low-threshold support services are a part of the German health care system and help relieving family caregivers. There is limited information available on how to construct and implement low-threshold support services for people with dementia and their families in Germany. Some studies describe separately different perspectives of experiences and expectations, but there is no study combining all the different perspectives of those involved and taking the arrangements and organisation as well as their opinions on supporting and inhibiting factors into consideration. Findings This protocol describes the design of the study on low-threshold support services for families with a person with dementia in two German regions. The aim is to develop recommendations on how to build up these services and how to implement them in a region. A quantitative as well as a qualitative approach will be used. The quantitative part will be a survey on characteristics of service users and providers, as well as health care structures of the two project regions and an evaluation of important aspects derived from a literature search. Group discussions and semi-structured interviews will be carried out to get a deeper insight into the facilitators and barriers for both using and providing these services. All people involved will be included, such as the people with dementia, their relatives, volunteers, coordinators and institution representatives. Discussion Results of this study will provide important aspects for policymakers who are interested in an effective and low-threshold support for people with dementia. Furthermore the emerging recommendations can help staff and institutions to improve quality of care and can contribute to developing health and social care structures in Germany.