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.
Dementia , Home Care Services , Humans , Caregivers , Qualitative Research , Review Literature as Topic
There is robust evidence for the clinical efficacy of telemedicine in heart failure (HF) patients to reduce mortality and morbidity. For the first time, the Federal Joint Committee (G-BA) has approved telemedicine for HF patients as a digital method of care for a well-defined heart failure population. Patients with HF and a reduced left ventricular ejection fraction (LVEF ) < 40 % are now eligible for telemonitoring in a real-world settings of out-patient care in Germany. The implementation of telemedicine in the German health care system is a complex process including the introduction of telemedical technologies, educational programs for the patients as well as the implementation of standard operating procedures (SOPs) for the staff of telemedical centers. The ongoing research in telemedicine in HF patients is focusing on three issues: a) research to extend the suitable HF-population for telemonitoring; b) research on new telemedical sensor technologies, e.g. a new pulmonary pressure measurement system (Cordella) and a system for wireless measurement of left atrial pressure (V-LAP); c) the introduction of methods of artifical intelligence (AI), e.g. the AI-based speech analysis using a smart phone to characterize the pulmonary fluid status.
Cardiology , Heart Failure , Telemedicine , Humans , Stroke Volume , Ventricular Function, Left , Telemedicine/methods , Heart Failure/diagnosis , Heart Failure/therapy
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.
Dementia , Home Care Services , Humans , Document Analysis , Caregivers , Delivery of Health Care , Dementia/therapy
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.
Dementia , Home Care Services , Humans , Caregivers , Dementia/therapy
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.
Dementia , Home Care Services , Caregivers , Cluster Analysis , Dementia/diagnosis , Dementia/epidemiology , Dementia/therapy , Germany/epidemiology , Humans , Quality of Life
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).
Dementia , Home Care Services , Aged , Caregivers , Delivery of Health Care , Dementia/therapy , Humans , Independent Living
Faithful genome duplication requires regulation of origin firing to determine loci, timing and efficiency of replisome generation. Established kinase targets for eukaryotic origin firing regulation are the Mcm2-7 helicase, Sld3/Treslin/TICRR and Sld2/RecQL4. We report that metazoan Sld7, MTBP (Mdm2 binding protein), is targeted by at least three kinase pathways. MTBP was phosphorylated at CDK consensus sites by cell cycle cyclin-dependent kinases (CDK) and Cdk8/19-cyclin C. Phospho-mimetic MTBP CDK site mutants, but not non-phosphorylatable mutants, promoted origin firing in human cells. MTBP was also phosphorylated at DNA damage checkpoint kinase consensus sites. Phospho-mimetic mutations at these sites inhibited MTBP's origin firing capability. Whilst expressing a non-phospho MTBP mutant was insufficient to relieve the suppression of origin firing upon DNA damage, the mutant induced a genome-wide increase of origin firing in unperturbed cells. Our work establishes MTBP as a regulation platform of metazoan origin firing.
Carrier Proteins/metabolism , DNA Replication , Replication Origin , Animals , Binding Sites , Cell Line , Conserved Sequence , Cyclin-Dependent Kinases/metabolism , DNA Damage , DNA-Binding Proteins/metabolism , Humans , Phosphorylation , Protein Binding , Protein Processing, Post-Translational
Accurate genome duplication underlies genetic homeostasis. Metazoan Mdm2 binding protein (MTBP) forms a main regulatory platform for origin firing together with Treslin/TICRR and TopBP1 (Topoisomerase II binding protein 1 (TopBP1)-interacting replication stimulating protein/TopBP1-interacting checkpoint and replication regulator). We report the first comprehensive analysis of MTBP and reveal conserved and metazoa-specific MTBP functions in replication. This suggests that metazoa have evolved specific molecular mechanisms to adapt replication principles conserved with yeast to the specific requirements of the more complex metazoan cells. We uncover one such metazoa-specific process: a new replication factor, cyclin-dependent kinase 8/19-cyclinC (Cdk8/19-cyclin C), binds to a central domain of MTBP. This interaction is required for complete genome duplication in human cells. In the absence of MTBP binding to Cdk8/19-cyclin C, cells enter mitosis with incompletely duplicated chromosomes, and subsequent chromosome segregation occurs inaccurately. Using remote homology searches, we identified MTBP as the metazoan orthologue of yeast synthetic lethal with Dpb11 7 (Sld7). This homology finally demonstrates that the set of yeast core factors sufficient for replication initiation in vitro is conserved in metazoa. MTBP and Sld7 contain two homologous domains that are present in no other protein, one each in the N and C termini. In MTBP the conserved termini flank the metazoa-specific Cdk8/19-cyclin C binding region and are required for normal origin firing in human cells. The N termini of MTBP and Sld7 share an essential origin firing function, the interaction with Treslin/TICRR or its yeast orthologue Sld3, respectively. The C termini may function as homodimerisation domains. Our characterisation of broadly conserved and metazoa-specific initiation processes sets the basis for further mechanistic dissection of replication initiation in vertebrates. It is a first step in understanding the distinctions of origin firing in higher eukaryotes.
Carrier Proteins/metabolism , Carrier Proteins/physiology , Saccharomyces cerevisiae Proteins/metabolism , Carrier Proteins/genetics , Cell Cycle Proteins/metabolism , Computational Biology/methods , Cyclin C/genetics , Cyclin C/metabolism , Cyclin-Dependent Kinase 8/genetics , Cyclin-Dependent Kinase 8/metabolism , Cyclin-Dependent Kinase 8/physiology , Cyclin-Dependent Kinases/metabolism , Cyclin-Dependent Kinases/physiology , DNA Replication/physiology , DNA-Binding Proteins/metabolism , HEK293 Cells , HeLa Cells , Humans , Mitosis , Protein Binding , Saccharomyces cerevisiae/metabolism , Saccharomyces cerevisiae Proteins/genetics
INTRODUCTION: Worldwide, 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 ANALYSIS: To 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. DISSEMINATION: The 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 NUMBER: CRD42016041727.
Delivery of Health Care/organization & administration , Dementia/nursing , Home Care Services/organization & administration , Research Design , Humans , Meta-Analysis as Topic , Systematic Reviews as Topic
BACKGROUND: The majority of people with dementia in Germany live at home. These informal care arrangements, which are mostly coordinated by informal carers, are the backbone of home-based dementia care. Creating and maintaining stability is an underlying theme in informal care; however, a definition of the complex phenomenon of 'stability' in this context is still lacking. AIM: The aim was to develop a working definition of stability of home-based care arrangements for people with dementia, which can be applied in current and future research projects at the German Center for Neurodegenerative Diseases in Witten (DZNE Witten) and others. MATERIAL AND METHODS: Ensuing from prior research a preliminary version of the definition was formulated. This definition was discussed in a focus group of scientific experts with expertise in dementia research and care (n = 8). After data analysis using content analysis, the definition was revised during a scientific colloquium (n = 18) and a consensus was finally reached. RESULTS: There were four major themes which were considered by the experts as being relevant for the definition of stability: (1) creating and maintaining stability as a continuous adaptation process, (2) a qualitative component of stability, (3) persons with dementia and informal carers as pivotal players and (4) transitions to residential care. CONCLUSION: The working definition introduced in this article reflects the authors' understanding of the phenomenon of stability of home-based care arrangements for people with dementia. In times of increasing need for evidence-based interventions it is necessary to develop elaborated definitions of complex phenomena in order to be able to systematically evaluate the efficacy of interventions on the basis of a common understanding.
Caregivers/classification , Delivery of Health Care/classification , Dementia/diagnosis , Dementia/nursing , Health Services for the Aged/classification , Home Care Services/classification , Terminology as Topic , Aged , Aged, 80 and over , Dementia/psychology , Female , Focus Groups , Geriatric Assessment/methods , Germany , Humans , Male
We present a combined socio- and psychotherapeutic intervention in couples affected by incipient dementia. We show that the consideration of both social and psychological resources play an important role in the therapy process. 2 additional case reports suggest that those principles of both socio- and psychotherapy can be successfully applied in early dementia.
Dementia/therapy , Psychotherapy , Social Support , Combined Modality Therapy , Dementia/psychology , Family Characteristics , Female , Humans , Male , Memory Disorders/psychology , Memory Disorders/therapy , Middle Aged , Personal Autonomy , Treatment Outcome
BACKGROUND: Non-pharmacological interventions are guideline-recommended as initial treatment for people with dementia in nursing homes. In Germany, there is no instrument available to collect standardized data on the application of all of these interventions; an investigation of their use in large-scale samples is not currently possible. This article describes the development and initial testing of a questionnaire (Dementia Care Questionnaire (DemCare-Q)) to assess provided non-pharmacological interventions in residents with dementia in nursing homes that can be completed by nurses. METHODS: The questionnaire development comprised the following steps to achieve content validity and feasibility: a structured content analysis of the German guideline for the care of people with dementia and challenging behavior in nursing homes and a systematic literature review of projects that implemented these; quantitative expert ratings and calculation of content validity indices; qualitative pre-test with future users using cognitive techniques; quantitative pre-test using frequency analysis of item non-response. RESULTS: The developed questionnaire covers seven dementia-specific non-pharmacological interventions in nursing homes. Problematic items could be improved by revising them successively, bringing forth a feasible and content valid version of the DemCare-Q. The DemCare-Q enables researchers to collect data on the application of dementia interventions in German nursing homes in large-scale studies. CONCLUSION: A literature review, expert rating and multi-method pre-test are important steps of questionnaire development. The applied methods ensure content validity and the practicability of the instrument. The publication of this process enhances the transparency of questionnaire design and supports researchers in solving problems in developing questions to assess the application of interventions. Since these are initial steps of questionnaire development, further testing of its reliability is needed.
Dementia/nursing , Nursing Homes/statistics & numerical data , Outcome Assessment, Health Care/statistics & numerical data , Surveys and Questionnaires , Feasibility Studies , Germany , Humans , Nursing Staff , Outcome Assessment, Health Care/methods , Reproducibility of Results
BACKGROUND: In Germany, the number of people with dementia living in nursing homes is rapidly increasing. Providing adequate care for their special needs is a challenge for institutions and their staff members. Because of the growing number of people with dementia, changes to the conceptual orientation of nursing homes have occurred. These changes include specialized living arrangements and psychosocial interventions recommended for people with dementia. Until now, the provision of dementia care and its association to the residents' behavior and quality of life is not well investigated in Germany. The purpose of this study is to describe the provision of dementia care and to identify resident- as well as facility-related factors associated with residents behavior and quality of life. METHODS/DESIGN: The DemenzMonitor study is designed as a longitudinal study that is repeated annually. Data will be derived from a convenience sample consisting of nursing homes across Germany. For the data collection, three questionnaires have been developed that measure information on the level of the nursing home, the living units, and the residents. Data collection will be performed by staff members from the nursing homes. The data collection procedure will be supervised by a study coordinator who is trained by the research team. Data analysis will be performed on each data level using appropriate techniques for descriptions and comparisons as well as longitudinal regression analysis. DISCUSSION: The DemenzMonitor is the first study in Germany that assesses how dementia care is provided in nursing homes with respect to living arrangements and recommended interventions. This study links the acquired data with residents' outcome measurements, making it possible to evaluate different aspects and concepts of care.
Dementia/epidemiology , Dementia/therapy , Homes for the Aged/standards , Nursing Homes/standards , Patient Care/standards , Aged , Aged, 80 and over , Dementia/diagnosis , Female , Germany/epidemiology , Homes for the Aged/trends , Humans , Longitudinal Studies , Male , Nursing Homes/trends , Patient Care/methods , Patient Care/trends
In 2007 guidelines for the care of people with dementia living in nursing homes, especially for handling challenging behaviour, have been published that recommend certain interventions. The aim of this study is a systematic review of publications about projects and the development and utilisation of interventions recommended in the German guideline in German nursing homes. For this purpose, 22 publications from 8 projects were analysed. The analysis was carried out on the basis of the CReDECI-criteria for the reporting of complex interventions. The publications described the application of reminiscence-therapy, Snoezelen, Dementia Care Mapping (DCM) and the use of understanding diagnostics as well as assessment instruments. Although the interventions were based on similar theoretical frames and had the same aim they contained different components. For the implementation a considerably amount of teaching and support by the project members was needed. A process evaluation as well as information about necessary adaptations to general conditions was given seldom. Partly, information that is important for the use in practice as well as in continuative studies is missing in the publications.
Alzheimer Disease/nursing , Homes for the Aged , Nursing Homes , Patient Care Planning , Adult , Aged , Alzheimer Disease/psychology , Germany , Guideline Adherence , Humans , Mental Disorders/nursing , Mental Disorders/psychology , Nurse-Patient Relations , Nursing Assessment , Professional-Family Relations
OBJECTIVE: The improvement of the quality of life of chronically ill patients has become an important goal in treatment. However, it is seldom taken into account that many other factors, in addition to somatic factors, have an influence on the quality of life of patients. Using patients with congenital heart defects as an example, we examined the relative significance of biological factors, compared to psychological and social factors, for the various quality of life dimensions. RESEARCH DESIGN AND METHODS: One hundred and eleven patients (aged 33+/-12 years) with different degrees of cardiac dysfunction were examined (NYHA 0: 2 I: 56, II: 38, III: 13, IV: 2). All patients for whom there was no contra-indication underwent a treadmill ergometry in order to determine their level of cardiopulmonary functioning (peak oxygen consumption: VO2max). All patients were asked to fill out questionnaires concerning their quality of life (WHOQOL-Bref), their cardiac complaints (Giessener Complaint Questionnaire GBB), their personality traits (Giessen Test GTS), and the social support they experience (Social Support Questionnaire SOZU-k22). The data were analyzed using a linear structural equation model (SEM). RESULTS: In all aspects but the social domain, the HRQL of CgHD patients was significantly diminished compared to the normal population. The SEM proposed was valid, showing good indices of fit (chi2 = 1.18; p = 0.55; AGFI = 0.92). The level of cardiopulmonary functioning was most significant for the reporting of specific cardiac complaints (beta = -28) and for the physical component of the general HRQL (beta = 32), although the former was also influenced by a depressed disposition (beta = -0.20) and the extent of social support experienced (beta = 0.18). The objective findings, however, had virtually no individual significance for the psychological (beta = 0.09) and social domains (beta = -0.02). These HRQL domains are primarily influenced by depressive personality traits (beta= -26/-0.16) and the social support experienced (beta = 0.51/0.51). CONCLUSIONS: The patient's organic dysfunction primarily determines illness-specific complaints but has little relevance for the psychological and social aspects of the HRQL. These aspects are predominantly determined by the patient's depressive disposition and by the experienced social support. A successful therapy should therefore take biological as well as psycho-social determinants of the quality of life into account.
Heart Defects, Congenital/physiopathology , Quality of Life , Adult , Germany , Heart Defects, Congenital/psychology , Humans , Middle Aged , Social Support , Surveys and Questionnaires
