Cross-national data on informal caregivers of older people with long-term care needs in the European population: time for a more coordinated and comparable approach.

To promote long-term care policies for older adults, accurate mapping of the often invisible and insufficiently recognized role of their informal caregivers is needed. This paper measures the prevalence of informal caregivers in the European population, illustrates current difficulties in gathering unequivocal information on this topic and deals with the scientific and policy implications of the problem. Using the European Health Interview Survey (EHIS), the European Quality of Life Survey (EQLS) and the Study on Health and Ageing in Europe (SHARE), the current difficulties in gathering unequivocal information on this topic are illustrated. In most countries, the share of informal caregivers varies, sometimes markedly, among the three surveys. As for the sex of caregivers, while confirming the well-known higher prevalence of caregivers among women than among men, large variations emerge across the three surveys in most countries in respect of the two sexes. The takeaway message of the paper is that it is urgent to promote international concerted action in gathering comprehensive informal caregiving information and/or exploring in greater depth the different intercultural understandings of informal care itself.

Concordance of self- and informant-rated depressive symptoms in nursing home residents with Dementia: cross-sectional findings.

BACKGROUND: Depression is highly prevalent in nursing home residents living with moderate to severe dementia. However, assessing depressive symptoms in residents with dementia can be challenging and may vary by rater perspective. We aimed to investigate the concordance of, and factors associated with self- and informant-rated depressive symptoms in nursing home residents with dementia. METHODS: Cross-sectional data was collected from N = 162 nursing home residents with dementia (age: 53-100; 74% women). Self-ratings were assessed with the Geriatric Depression Scale, while the depression and anxiety items of the Neuropsychiatric Inventory were used for informant-ratings. Cohen's Kappa was calculated to determine the concordance of both measures and of each with antidepressant medication. Multivariate associations with sociodemographic variables, self- and informant-rated quality of life, dementia stage, neuropsychiatric symptoms, functional status and antidepressant medication were analysed with linear mixed models and generalized estimating equations. RESULTS: Concordance between self- and single item informant-rated depressive symptoms was minimal (Cohen's Kappa = .22, p = .02). No concordance was found for self-reported depressive symptoms and the combined informant-rated depression-anxiety score. Self-reported depression was negatively associated with self-rated quality of life (ß = -.32; 95%CI: -.45 to -.19, p < .001), informant-rated quality of life (ß = -.25; 95%CI: -.43 to -.07, p = .005) and functional status (ß = -.16; 95%CI: -.32 to -.01, p = .04), whilst single item informant-rated depression revealed negative associations with informant-rated quality of life (ß = -.32; 95%CI: -.52 to -.13, p = .001) and dementia stage (ß = -.31; 95%CI: -.52 to -.10, p = .004). The combined informant-rated depression-anxiety score showed negative associations with self-rated quality of life (ß = -.12; 95%CI: -.22 to -.03, p = .01) and dementia stage (ß = -.37; 95%CI: -.67 to -.07, p = .02) and a positive association with neuropsychiatric symptoms (ß = .30; 95%CI: .10 to .51, p = .004). No concordance was found with antidepressant medication. CONCLUSIONS: In line with our expectations, low agreement and unique association patterns were found for both measures. These findings indicate that both instruments address different aspects of depression und underline the need for comprehensive approaches when it comes to detecting signs of clinically relevant depressive symptoms in dementia. TRIAL REGISTRATION: The trial was registered with the ISRCTN registry (Trial registration number: ISRCTN98947160 ).

[Experiences and perspectives of nursing home residents with depressive symptoms during the COVID-19 pandemic: a qualitative study]. / Erfahrungen und Sichtweisen von Pflegeheimbewohnenden mit depressiver Symptomatik während der COVID-19-Pandemie: eine qualitative Studie.

BACKGROUND: The COVID-19 pandemic requires extensive health protection interventions in order to prevent infections in the long-term care setting. These interventions impact residents' lives, including an increase in depressive symptoms and other negative concomitants. OBJECTIVE: The study aimed to explore the experiences and perspectives of nursing home residents with depressive symptoms during the pandemic. METHODS: In this study nine guideline-based interviews were conducted with residents. These were analyzed using the content-structured content analysis according to Kuckartz. RESULTS: Three main themes were identified: perceptions and emotions related to the pandemic, changes and limitations due to the interventions and wishes in terms of the pandemic. The residents reported both emotional distress and not being afraid of infection and its consequences. In addition, some respondents reported unpleasant restrictions, such as wearing masks. In some cases their usefulness was critically questioned. Furthermore, various wishes of the residents in relation to the pandemic, such as leaving the nursing home, were identified. CONCLUSION: The study showed complex perceptions, changes, and wishes due to the pandemic and its interventions. Therefore, an individual approach to residents with depressive symptoms is necessary to avoid an increase in mental health problems. Against this background, there is a need for participatory implementation of health protection measures for the particularly vulnerable group of nursing home residents.

[What potential do geographic information systems have for population-wide health monitoring in Germany? : Perspectives and challenges for the health monitoring of the Robert Koch Institute]. / Welches Potenzial haben Geoinformationssysteme für das bevölkerungsweite Gesundheitsmonitoring in Deutschland? : Perspektiven und Herausforderungen für das Gesundheitsmonitoring am Robert Koch-Institut.

Geographic information systems (GISs) are computer-based systems with which geographical data can be recorded, stored, managed, analyzed, visualized and provided. In recent years, they have become an integral part of public health research. They offer a broad range of analysis tools, which enable innovative solutions for health-related research questions. An analysis of nationwide studies that applied geographic information systems underlines the potential this instrument bears for health monitoring in Germany. Geographic information systems provide up-to-date mapping and visualization options to be used for national health monitoring at the Robert Koch Institute (RKI). Furthermore, objective information on the residential environment as an influencing factor on population health and on health behavior can be gathered and linked to RKI survey data at different geographic scales. Besides using physical information, such as climate, vegetation or land use, as well as information on the built environment, the instrument can link socioeconomic and sociodemographic data as well as information on health care and environmental stress to the survey data and integrate them into concepts for analyses. Therefore, geographic information systems expand the potential of the RKI to present nationwide, representative and meaningful health-monitoring results. In doing so, data protection regulations must always be followed. To conclude, the development of a national spatial data infrastructure and the identification of important data sources can prospectively improve access to high quality data sets that are relevant for the health monitoring.

[Regionalization of federal health reporting using the example of diabetes surveillance : Aims and results of the discussion between the Robert Koch Institute and the federal states]. / Regionalisierung der Gesundheitsberichterstattung am Beispiel Diabetes-Surveillance : Ziele und Ergebnisse des Bund-Länder-Gesprächs am Robert Koch-Institut.

Insufficiently treated diabetes mellitus can lead to severe comorbidities. National and international analyses show a continuous increase in diabetes prevalence over the last decades. Currently, an indicator-based national diabetes surveillance system is implemented at the Robert Koch Institute (RKI) to monitor and report on diabetes development on the basis of available primary and secondary data. The aim of the meeting was to go into deeper discussions and to integrate expectations and expertise of the federal states into the design of the national surveillance system. A close collaboration between the RKI and the federal states is intended.

[Integration of secondary data into national diabetes surveillance : Background, aims and results of the secondary data workshop at the Robert Koch Institute]. / Integration von Sekundärdaten in die Nationale Diabetes-Surveillance : Hintergrund, Ziele und Ergebnisse des Sekundärdaten-Workshops am Robert Koch-Institut.

Epidemiological data provide evidence that diabetes mellitus is a highly relevant public health issue in Germany as in many other countries. The Robert Koch Institute (RKI) is in the process of building a national diabetes surveillance system that is aimed at establishing indicator-based public health monitoring of diabetes population dynamics using primary and secondary data. The purpose of the workshop was to conduct an inventory of available secondary data sources and to discuss data contents, data access, data analysis examples in addition to the options for ongoing data use for diabetes surveillance.

[Factors of endangering and violation of autonomy in residential nursing homes: results of a scoping review]. / Faktoren der Autonomiegefährdung und -verletzung in stationären Altenpflegeeinrichtungen: Ergebnisse eines Scoping Review.

Background: Respecting autonomy is one of the guiding principles of medical and nursing ethics. Nursing home residents represent a particularly relevant target group whose autonomy can be endangered or violated. Aim: The study aimed to identify factors that endanger or violate the nursing home residents' autonomy and to determine specific life situations and contexts in which these factors are located. Methods: A scoping review was carried out according to the Joanna Briggs Institute-method. Empirical results from journal articles from the publication period 2000-2021 were included. The articles were analyzed using qualitative content analysis. Results: A total of 75 articles were finally included in the review. Identified factors of the endangerment and violation of autonomy are assigned to topic areas located at the level of actors, (care) relationships and structures. Factors that can violate or endanger the residents' autonomy were found in the entire everyday life of the residents. Conclusion: The localization of the identified endangerments/violations on various actor and structural levels indicates the need for comprehensive preservation and promotion of residents' autonomy in nursing homes.

Needs and Needs Communication of Nursing Home Residents with Depressive Symptoms: A Qualitative Study.

Nursing home residents are affected by depressive symptoms more often than elders living at home. There is a correlation between unmet needs and depression in nursing home residents, while met needs positively correlate with greater satisfaction and well-being. The study aims to examine the needs of nursing home residents with depressive symptoms and the communication of those needs, as no previous study has explicitly addressed the needs of this group of people and the way they are communicated. We conducted semi-structured interviews with 11 residents of three nursing homes and analyzed them using content-structuring content analysis. The residents reported diverse needs, assigned to 12 categories. In addition, barriers such as health impairments prevented the fulfillment of needs. As to the communication of needs, various interlocutors, facilitators, and barriers were identified. The findings reveal that residents can express their needs and are more likely to do so if the interlocutors are patient and take them seriously. However, lack of confidants, missing or non-functioning communication tools, impatience and perceived lack of understanding on the part of caregivers, and residents' insecurities limit communication of needs.

Factors Worsening and Mitigating the Consequences of the COVID-19 Outbreak on the Overall Health of Informal Caregivers of Older People with Long-Term Care Needs Living in Germany and in Italy.

Population ageing and the higher prevalence of multimorbidity in later life are increasing the demand for Long-Term Care (LTC) worldwide; this has been exacerbated by the COVID-19 pandemic. As in Europe and beyond, the bulk of care for frail older people is carried out by informal caregivers. This study aimed at understanding the factors affecting the overall worsening health of informal caregivers of older people with LTC needs living in Germany and Italy during the outbreak. To this purpose, 319 informal caregivers (149 in Germany and 173 in Italy) were surveyed online in 2020-2021. A logistic regression analysis was performed by country, to obtain an adjusted estimate of the risk of worsening of caregivers' health. This risk increased by 42% for German caregivers compared to Italian ones, despite the former receiving more formal services. This may depend on different quality standards of LTC services and caregivers' expectations, and on differing policies concerning migrant care workers (MCWs) during the outbreak, who could not enter Germany and were "trapped" at care recipients' homes in Italy. Results call for in-home care reforms and policies guaranteeing more effective caregiver support, home care services and fairer working condition for MCWs in both countries.

Physical Activity Treatment in Adults with Type 2 Diabetes Mellitus per National Treatment Guidelines for Germany: A Telephone-Survey-Based Analysis.

Physical activity (PA) is effective in the prevention of type 2 diabetes mellitus (T2DM). According to the German national treatment guidelines for T2DM, PA is recommended at all stages of the treatment process. Adults with T2DM were recruited within the cross-sectional telephone survey 'Disease knowledge and information needs-Diabetes mellitus (2017)'. Self-reported data on socio-demographic characteristics, previous and current T2DM treatment, and PA behavior were collected. Using multivariable logistic regression models, the correlation between PA treatment (referrals and recommendations) and PA was investigated. Overall, 1149 adults diagnosed with T2DM are included in the analysis. Of the participants, 66.7% reported having ever received PA as part of their T2DM treatment with 61% of the participants reporting PA treatment at the time of the initial T2DM diagnosis and 54% at the time of the interview. Women, older participants, and those with a lower educational level were less likely to have ever been treated with PA. Currently being treated with PA as part of the T2DM treatment was associated with higher rates of achieving the World Health Organization's PA recommendations (≥150 min per week) (OR = 1.95, 95% CI: 1.42-2.68), as well as ever being treated with PA (OR = 1.74, 95% CI: 1.20-2.38). The analyses showed that PA treatment plays a role in the treatment process of T2DM, but not all patient subgroups benefit in the same way. Efforts to increase PA treatment as part of T2DM treatment are needed, especially for those who are currently not treated with PA. Further research is needed to better understand the type of PA (e.g., structured or unstructured) undertaken by adults with T2DM to develop tailored PA interventions for adults with T2DM and for those in vulnerable subgroups.

Wishes and Needs of Nursing Home Residents: A Scoping Review.

Falling birth rates and rising life expectancy are leading to global aging. The proportional increase in older people can be observed in almost all countries and regions worldwide. As a result, more people spend their later years in nursing homes. In homes where person-centered care is implemented, residents report greater satisfaction and quality of life. This approach is based on the wishes and needs of the residents. Therefore, the purpose of this scoping review is to explore the wishes and needs of nursing home residents. A scoping review of the literature was conducted in which 12 databases were systematically searched for relevant articles according to PRISMA-ScR guidelines. Both quantitative and qualitative study designs were considered. A total of 51 articles met the inclusion criteria. Included articles were subjected to thematic analysis and synthesis to categorize findings into themes. The analysis identified 12 themes to which the wishes and needs were assigned: (1) Activities, leisure, and daily routine; (2) Autonomy, independence, choice, and control; (3) Death, dying, and end-of-life; (4) Economics; (5) Environment, structural conditions, meals, and food; (6) Health condition; (7) Medication, care, treatment, and hygiene; (8) Peer relationship, company, and social contact; (9) Privacy; (10) Psychological and emotional aspects, security, and safety; (11) Religion, spirituality; and (12) Sexuality. Nursing home residents are not a homogeneous group. Accordingly, a wide range of needs and wishes are reported in the literature, assigned to various topics. This underscores the need for tailored and person-centered approaches to ensure long-term well-being and quality of life in the nursing home care setting.

Population change and the burden of hospitalization in Germany 2000-2040: Decomposition analysis and projection.

Demographic factors, such as population aging and shrinkage, and non-demographic factors, such as hospitalization rate and length of hospital stay, generate challenges for inpatient care. This paper used decomposition analysis to assess how changes in these factors affected the number of hospital treatment days from 2000 to 2015 in Germany. Demographic aging was linked to increases in the number of treatment days for women (+10.0%) and men (+19.2%) and in hospitalization rates for women +6.0% and men +5.4%. However, these increases were offset by decreases in the number of hospital days (women: 16.5%; men: 7.3%) and length of stay (women: -27.4%; men -26.3%). For the projection up to 2040, 12 scenarios were developed (six for women and six for men) using three variants for future population demographics and two variants for future length of stay and hospitalization rates. One of the two variants for future length of stay and hospitalization rates provides for a constant value for the year 2015. For the second of these two variants variant, a logarithmic model was estimated on the basis of values from 2000 to 2015. and the trends were extrapolated using this model until 2040. The strongest overall predicted increase was 18.4% between 2015 and 2040, including a 22.4% increase for men. In two scenarios for women, only slight declines were predicted. All results, both for the decomposition analysis and projection, indicated a moderate but sustained effect of demographic aging on the number of hospital treatment days, leading to a significant increase in hospital treatment days over the study period. Non-demographic factors also had strong influences, especially in shorter time periods, but these effects offset each other over time. The change in the population size in the period under study had very little effect on the number of hospital treatment days.

Factors associated with undiagnosed type 2 diabetes in Germany: results from German Health Interview and Examination Survey for Adults 2008-2011.

INTRODUCTION: To identify characteristics of people with undiagnosed type 2 diabetes (T2D) among adults in Germany. RESEARCH DESIGN AND METHODS: The study population comprised participants aged 40-79 years of the German Health Interview and Examination Survey for Adults 2008-2011. Glycemic status was categorized as undiagnosed T2D (glycated hemoglobin A1c (HbA1c) ≥48 mmol/mol (6.5%), n=135), diagnosed T2D (n=518) and normoglycemia (HbA1c<48 mmol/mol (6.5%), n=4451). Multinomial logistic regression models including glycemic status as the outcome variable and sociodemographic characteristics, living alone, diabetes risk factors and healthcare services utilization as independent variables were used to identify factors associated with undiagnosed T2D compared with normoglycemia and diagnosed T2D. Odds ratios (ORs) and 95% confidence intervals (CIs) are reported as measure of association between the outcome and independent variables. RESULTS: The prevalence of undiagnosed T2D was 2.9% (95% CI 2.2% to 3.9%) at an overall prevalence of 12.3% (11.0% to 13.6%) of persons with undiagnosed or diagnosed T2D. In multivariable analyses, factors associated with undiagnosed as well as diagnosed T2D in comparison to normoglycemia were older age (OR 1.04, 95% CI 1.01 to 1.06, per year, for undiagnosed T2D; OR 1.08, 1.07 to 1.10 for diagnosed T2D), male sex (3.33, 2.18 to 5.07; 1.91, 1.43 to 2.56), obesity (3.47, 2.17 to 5.56; 2.68, 2.04 to 3.52), hypertension (1.66, 1.09 to 2.53; 2.04, 1.42 to 2.95) and parental history of diabetes (2.04, 1.24 to 3.35; 3.16, 2.30 to 4.34). Variables independently associated with undiagnosed T2D but not diagnosed T2D included living alone (2.20; 1.36 to 3.56) and not seeing a doctor within the past year (2.57; 1.34 to 4.93). People with undiagnosed T2D were further younger and more likely to be male sex and reside in the western part of Germany than people with diagnosed T2D. CONCLUSION: Apart from major known risk factors of diabetes, characteristics specific to undiagnosed diabetes among adults in Germany will serve to inform the national education and communication strategy on diabetes mellitus in Germany.

How Many Older Informal Caregivers Are There in Europe? Comparison of Estimates of Their Prevalence from Three European Surveys.

Informal caregivers are people providing some type of unpaid, ongoing assistance to a person with a chronic illness or disability. Long-term care measures and policies cannot take place without taking into account the quantitatively crucial role played by informal caregivers. We use the European Health Interview Survey (EHIS), the European Quality of Life Survey (EQLS), and the Study on Health and Ageing in Europe (SHARE) to measure the prevalence of informal caregivers in the European population, and analyze associated socio-demographic factors. This rate ranges between about 13 percent in Portugal and Spain, and more than 22 percent in Luxembourg, Belgium, and Denmark. It declines in older age groups and, on average, is lower in men than in women in all countries studied, and lower among the poorly educated compared to those with higher levels of education. However, large variance was observed in the average share of informal caregivers for most countries between the three surveys. Our findings, estimated through the three surveys, reveal common trends, but also a series of disparities. Additional research will be needed to enable policy makers to access a richer and more harmonized body of data, allowing them to adopt truly evidence-based and targeted policies and interventions in this field.

Risk Profiles for Care Dependency: Cross-Sectional Findings of a Population-Based Cohort Study in Germany.

Background: Rising life expectancy in Western societies is accompanied by a rising incidence of care dependency (CD) among older people. Objective: The aim of the study was to examine which health-related and social determinants were associated with CD. Method: We used cross-sectional data from the first follow-up (N = 1,699) of a prospective, population-based cohort study of older participants (≥70 years). CD was assessed if participants required substantial assistance in at least two activities of daily living for 90+ minutes daily. Multivariate logistic regressions were applied. Results: Participants' mean age was 82 years; 18.9% were care-dependent. CD was significantly associated with older age, urinary incontinence, stroke, falls, cancer, diabetes, education level, having no partner, limited mobility, and limited physical activity. Discussion: Our research highlights the importance of promoting mobility, even in care-dependent people. Further research should investigate the role of partnership in terms of the prevention and delay of CD.

First results from the study 'Disease knowledge and information needs - Diabetes mellitus (2017)'.

Very little research has been undertaken into what people in Germany know about diabetes, the information they may require about the condition, where they look for such information and how they rate the information currently available. In 2017, the Robert Koch Institute (RKI) carried out a nationwide telephone survey aimed at answering these questions. The study entitled 'Disease knowledge and information needs - Diabetes mellitus (2017)' focused on people aged at least 18 years. A total of 2,327 people without diabetes and 1,479 people with diagnosed diabetes were interviewed for the study. First results show that 56.7% of people without diabetes and 92.8% of those with diabetes rate their knowledge about the condition as 'very good' or 'good'. People without diabetes were found to have the strongest need for information in terms of 'lifestyle changes, health promotion and disease prevention', whereas respondents with diabetes stressed the strongest need for information about 'treatment and therapy'. Almost a third of respondents without diabetes have actively sought information about diabetes at least once, mostly via print media. Patients with diabetes stated that their general practitioner was their most frequent source of information about the condition. In both groups, about half of respondents reported that they found it difficult to judge the trustworthiness of the information published in the media about diabetes. The results of the study form part of the German National Diabetes Surveillance, which is coordinated by the RKI. The data are also intended to be used by the Federal Centre for Health Education to develop a strategy to improve the information provided about diabetes.

Selecting and defining indicators for diabetes surveillance in Germany.

Mainly because of the large number of people affected and associated significant health policy implications, the Robert Koch Institute (RKI) is developing a public health surveillance system using diabetes as an example. In a first step to ensure long-term and comparable data collection and establish efficient surveillance structures, the RKI has defined a set of relevant indicators for diabetes surveillance. An extensive review of the available literature followed by a structured process of consensus provided the basis for a harmonised set of 30 core and 10 supplementary indicators. They correspond to the following four fields of activity: (1) reducing diabetes risk, (2) improving diabetes early detection and treatment, (3) reducing diabetes complications, (4) reducing the disease burden and overall costs of the disease. In future, in addition to the primary data provided by RKI health monitoring diabetes surveillance needs to also consider the results from secondary data sources. Currently, barriers to accessing this data remain, which will have to be overcome, and gaps in the data closed. The RKI intentends to continuously update this set of indicators and at some point apply it also to further chronic diseases with high public health relevance.

Diabetes Surveillance in Germany - Background, concept and prospects.

Diabetes mellitus is a chronic disease that is associated with serious health problems and high costs. According to estimates gained from nationally representative health surveys conducted by the Robert Koch Institute (RKI), 4.6 million adults aged 18 to 79 suffer from diabetes in Germany. In addition, around 1.3 million adults have undetected diabetes. A surveillance system is currently being established at the RKI in order to gather the data sources available on diabetes in Germany and to provide reliable and comparable findings on time trends covering the frequency, progress of treatment, prevention and care of the disease. Next to identifying trends, diabetes surveillance also needs to detect differences in epidemiology that are related to social status or geographic region. Diabetes surveillance at the RKI is being undertaken in close cooperation with stakeholders involved in science, health-care provision, health policy and health-system self-governance. Furthermore, its progress is accompanied by an interdisciplinary scientific advisory board. Diabetes surveillance involves the following key elements: 1) the development of a research-based conceptual framework that uses indicators to appropriately measure developments in the disease; 2) the establishment of standards for the use of existing data sources and the identification of barriers to data usage and gaps in the data; and 3) the implementation of focused health reporting that is geared towards the target group. In addition to policy consultations, diabetes surveillance must guarantee the provision of timely and continuous information to the public together with the Federal Agency for Health Education. The implementation of a diabetes surveillance in Germany should act as a model and serve as a basis with which to establish the surveillance of other non-communicable diseases. In principle, indicator-based diabetes monitoring at the population level can be viewed as providing the body for evidence-based policy consultation and focused health policy. In turn, this should enable the implementation of effective disease prevention measures and high-quality care for all groups within the population.

Feasibility of the Factorial Survey Method in Aging Research: Consistency Effects Among Older Respondents.

BACKGROUND: The factorial survey (FS) method is increasingly used in the social sciences. It is particularly suitable for studying decision situations that are difficult to assess empirically. This article evaluates whether the FS method is suitable for studying decisions in gerontological research. METHODS: The present article draws on data from the Housing Opportunities & Mobility in the Elderly study. A total of 103 respondents (between 55 and 90 years) were asked to make hypothetical relocation decisions. The consistency of these responses was assessed as a function of respondents' age, gender, immigration background, education, household income, employment status, and intention to move. RESULTS: No significant differences in response consistency were attributable to age, gender, education, or immigration background. The personal relevance of the survey topic was positively related to response consistency in multiperson households. CONCLUSION: FS method can, under certain methodological conditions, be used among older adults especially when the topic of the survey is relevant to their daily lives.