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.
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.
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.
BackgroundLow-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.FindingsThis 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.DiscussionResults 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.
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.
Was ist (zu dieser Thematik) schon bekannt?Niedrigschwellige Betreuungsangebote sind eine Möglichkeit zur Entlastung pflegender Angehöriger. Pfl ege 2014; 27 (1): 7 -18 Originalarbeit 11 (MW 3,43 (Ehlers, 2010;Fringer, 2011;Gräßel et al., 2010;Gräßel et al., 2009;Schilder & Florian, 2012 Pfl ege 2014; 27 (1): 7 -18 Originalarbeit 17 vice it seems to be import to have a transparent description of the care with a focus on the needs and wellbeing of the person with dementia. Was ist neu? Aus Sicht der Angehörigen sind v. a. die inhaltliche Gestaltung der Betreuung und das Wohlergehen des Menschen mit Demenz wichtig. Welche Konsequenzen haben die Ergebnisse für die Pflegepraxis? Es ist eine gezieltere Ausrichtung der Betreuung an den
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