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.

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.

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.

[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.

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.

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.

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.

Empirical development of a typology on residential long-term care units in Germany - results of an exploratory multivariate data analysis.

BACKGROUND: Organizational health care research focuses on describing structures and processes in organizations and investigating their impact on the quality of health care. In the setting of residential long-term care, this effort includes the examination and description of structural differences among the organizations (e.g., nursing homes). The objective of the analysis is to develop an empirical typology of living units in nursing homes that differ in their structural characteristics. METHODS: Data from the DemenzMonitor Study were used. The DemenzMonitor is an observational study carried out in a convenience sample of 103 living units in 51 nursing homes spread over 11 German federal states. Characteristics of living units were measured by 19 variables related to staffing, work organization, building characteristics and meal preparation. Multiple correspondence analysis (MCA) and agglomerative hierarchical cluster analysis (AHC) are suitable to create a typology of living units. Both methods are multivariate and explorative. We present a comparison with a previous typology (created by a nonexplorative and nonmultivariate process) of the living units derived from the same data set. RESULTS: The MCA revealed differences among the living units, which are defined in particular by the size of the living unit (number of beds), the additional qualifications of the head nurse, the living concept and the presence of additional financing through a separate benefit agreement. We identified three types of living units; these clusters occur significantly with a certain combination of characteristics. In terms of content, the three clusters can be defined as: "house community", "dementia special care units" and "usual care". CONCLUSION: A typology is useful to gain a deeper understanding of the differences in the care structures of residential long-term care organizations. In addition, the study provides a practical recommendation on how to apply the results, enabling living units to be assigned to a certain type. The typology can be used as a reference for definitions.

Regional dementia care networks in Germany: changes in caregiver burden at one-year follow-up and associated factors.

BACKGROUND: Recently, regional dementia care networks (DCNs) have been established in Germany to provide timely support for persons with dementia (PwDs) and their families. There is a lack of research in this setting. This study was conducted to describe the burden experienced by informal caregivers over the course of one year when utilizing a DCN and the factors affecting potential changes in caregiver burden during that time. METHODS: The study was part of the DemNet-D project, a multi-center observational study of DCNs in Germany. Standardized questionnaires were administered during face-to-face interviews at baseline and at a one-year follow-up with PwDs and their informal caregivers who used a DCN. Based on qualitative data, four DCN governance types were identified and used in a multivariate analysis of burden categories. RESULTS: A total of 389 PwD-informal caregiver dyads completed the follow-up assessment. At follow-up, the dyads reported significantly lower scores for burden in relation to practical care tasks, conflicts of need, and role conflicts. This change was associated with the PwD-caregiver relationship, the caregiver's gender and health status, and the PwD's socio-economic status. The governance structure of the DCNs was associated with change in one of the four burden categories. CONCLUSIONS: Our data provide the first indications that different governance structures of DCNs seem to be similarly well suited to support network users and might contribute to reducing caregiver burden. However, further studies set in DCNs examining factors that mediate changes in burden are needed to draw strong conclusions regarding the effectiveness of DCNs. Gender differences and the PwD-caregiver relationship should be considered by DCN stakeholders when developing support structures.

Individualized formulation-led interventions for analyzing and managing challenging behavior of people with dementia - an integrative review.

OBJECTIVE: Individualized formulation-led interventions offer a promising approach for analyzing and managing challenging behaviors in people with dementia. Little is known about which individualized formulation-led interventions exist and what effects these interventions have on people with dementia and their caregivers. Therefore, the review aims to describe and examine existing interventions and to review their evidence. METHODS: An integrative review of individualized formulation-led interventions for managing challenging behavior in people with dementia was conducted. PUBMED, PsycINFO [EBSCO] and CINAHL [EBSCO] databases were searched between February and April 2014 using key terms related to dementia, challenging behavior and individualized formulation- led interventions. The literature search was limited to German and English publications published from 1995. No limitations were placed on the type of paper, type of study design and stage of disease or setting. 37 relevant papers that met the inclusion criteria were included in this review. RESULTS: The literature review provided 14 different individualized formulation-led interventions. The effects on people with dementia were diverse, as only half of the studies showed a significant reduction in behaviors compared with the control group. Family caregivers felt less upset about the challenging behavior and more confident in their ability to manage the behavior. CONCLUSION: There is a clear need for further research on individualized formulation-led interventions. The results of this review have the potential for developing interventions and for designing methodological robust evaluation studies that take into account the effectiveness of individualized formulation-led interventions on patient and caregiver outcomes.

Caregiver burden assessed in dementia care networks in Germany: findings from the DemNet-D study baseline.

OBJECTIVES: This paper aimed to describe the burden experienced by informal caregivers supporting a person with dementia (PwD) who lives at home and utilizes a dementia care network (DCN), to investigate the factors that are associated with caregiver burden, and to identify possible differences in caregiver burden among different types of DCNs. METHOD: This study was part of a multi-center, interdisciplinary evaluation of DCNs in Germany (DemNet-D). Cross-sectional data were collected in face-to-face interviews with people with dementia (PwDs) and their caregivers, and 13 DCNs were represented. Standardized questionnaires were used to assess caregiver burden, challenging PwD behaviors, functional competence and caregiver health status. Based on qualitative data, four DCN governance types were used in a multivariate analysis of burden categories. RESULTS: There were 560 PwD-caregiver dyads enrolled in the study. Informal caregivers (n = 536) reported a low-to-moderate burden associated with PwD characteristics (instrumental activities of daily living, challenging behaviors) and caregiver characteristics (gender) as well as the relationship between the caregivers and PwDs. Women felt more burdened but also showed higher levels of personal development. No differences were observed among the different DCN governance types. CONCLUSIONS: DCNs might contribute toward moderate to low caregiver burden. Indicators of positive caregiving aspects can be used by DCNs to advance support structures for informal caregivers drawing upon interventions already established for other community settings. Particular interest should be paid to female and spousal caregivers who might be in in need of greater and/or different kinds of support.

[Stability of home based care arrangements for people with dementia : Development of a consensus definition of stability using expert focus groups]. / Stabilität von häuslichen Versorgungsarrangements für Menschen mit Demenz : Entwicklung und Konsentierung einer Definition von Stabilität durch Expertenfokusgruppen.

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.

[Users of regional dementia care networks in Germany : First results of the evaluation study DemNet-D]. / Nutzer und Nutzerinnen regionaler Demenznetzwerke in Deutschland : Erste Ergebnisse der Evaluationsstudie DemNet-D.

BACKGROUND: In Germany a growing number of community-based support services for people with dementia (PwD) and their caregivers are organized in dementia care networks (DCN), which provide a single point of entry to social facilities and offer personal care and support. OBJECTIVE: The aim of this study was to describe the health, functional and social characteristics of PwDs enrolled in DCNs throughout Germany because no data are currently available on this aspect. MATERIAL AND METHODS: As part of the multi-center, multi-professional 12-month follow-up study DemNet-D, data on functional and psychological health, sociodemographic and dementia-specific factors and social inclusion were collected in standardized interviews with PwDs living at home. RESULTS: A total of 560 PwDs with an average age of 80 years were enrolled in the study. Of the participants approximately 50 % had Alzheimer's dementia and more than 75 % demonstrated at least a challenging form of behavior. More than half of the participants lived together with a partner or relative. Instrumental activities of daily living (IADLs) were very limited; nevertheless, one in five PwDs showed no long-term care-dependency level. The participants reported having a relatively low feeling of loneliness and a high feeling of social inclusion, depending on the severity of dementia. CONCLUSION: This is one of the very first studies generating data on PwDs who receive domiciliary care within DCNs in Germany. The results suggest that the regional DCNs make a successful contribution to overcoming the interface problem and can, therefore, contribute to a more stable care situation and better social integration of PwDs.

People with dementia in nursing home research: a methodological review of the definition and identification of the study population.

BACKGROUND: There are various definitions and diagnostic criteria for dementia, leading to discrepancies in case ascertainment in both clinical practice and research. We reviewed the different definitions, approaches and measurements used to operationalize dementia in health care studies in German nursing homes with the aim of discussing the implications of different approaches. METHODS: We conducted a systematic search of the MEDLINE and CINAHL databases to identify pre-2016 studies conducted in German nursing homes that focused on residents with dementia or cognitive impairment. In- or exclusion of studies were consented by all authors; data extraction was independently carried out by 2 authors (RP, SJ). The studies' sampling methods were compared with respect to their inclusion criteria, assessment tools and methods used to identify the study population. RESULTS: We summarized case ascertainment methods from 64 studies. Study participants were identified based on a diagnosis that was evaluated during the study, or a recorded medical dementia diagnosis, or a recorded medical diagnosis either with additional cognitive screenings or using screening tests exclusively. The descriptions of the diagnostics that were applied to assess a diagnosis of dementia were not fully transparent in most of the studies with respect to either a clear reference definition of dementia or applied diagnostic criteria. If reported, various neuropsychological tests were used, mostly without a clear rationale for their selection. CONCLUSION: Pragmatic considerations often determine the sampling strategy; they also may explain the variances we detected in the different studies. Variations in sampling methods impede the comparability of study results. There is a need to consent case ascertainment strategies in dementia studies in health service research in nursing homes. These strategies should consider resource constraints and ethical issues that are related to the vulnerable population of nursing home residents. Additionally, reporting about dementia studies in nursing homes need to be improved. If a diagnosis cannot be evaluated based on either ICD or DSM criteria, the study population may not be reported as having dementia. If a diagnosis is evaluated based on ICD or DSM criteria within the study, there is a need for more transparency of the diagnostic process.

[ Low-threshold support services for people with dementia from the family carers' viewpoint]. / Niedrigschwellige Betreuungsangebote für Menschen mit Demenz aus Sicht pflegender Angehöriger.

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.

Longitudinal evaluation of dementia care in German nursing homes: the "DemenzMonitor" study protocol.

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.