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
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
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
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.
Community Health Services , Dementia/therapy , Respite Care , Caregivers/psychology , Community Health Services/organization & administration , Community Health Services/statistics & numerical data , Female , Germany , Humans , Interviews as Topic , Male , Qualitative Research , Social Support
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.
Alzheimer Disease/nursing , Attitude , Caregivers/psychology , Respite Care/organization & administration , Adult , Aged , Aged, 80 and over , Alzheimer Disease/economics , Alzheimer Disease/psychology , Caregivers/economics , Consumer Behavior/economics , Cost of Illness , Cost-Benefit Analysis/economics , Cross-Sectional Studies , Female , Germany , Health Services Needs and Demand/economics , Health Services Needs and Demand/organization & administration , Humans , Male , Middle Aged , Respite Care/economics , Respite Care/psychology , Surveys and Questionnaires
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.
Day Care, Medical/psychology , Dementia/psychology , Group Processes , Respite Care/psychology , Social Support , Female , Germany , Humans , Male , Qualitative Research
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.
Alzheimer Disease/nursing , Alzheimer Disease/psychology , Day Care, Medical/psychology , Group Processes , Respite Care/psychology , Social Behavior , Aged , Day Care, Medical/organization & administration , Germany , Group Structure , Humans , Interpersonal Relations , Nurse-Patient Relations , Nursing Assessment , Nursing Records , Observation , Respite Care/organization & administration
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.
Dementia/therapy , Social Support , Family , Germany , Health Planning Guidelines , Humans , Interviews as Topic , Surveys and Questionnaires
