Markus Wübbeler

Nonpharmacological therapies and provision of aids in outpatient dementia networks in Germany: utilization rates and associated factors.

Background Nonpharmacological therapies and the provision of aids are described to be supportive in the treatment of persons with dementia (PWDs). These aim to maintain individuals’ participation in daily activities as long as possible, to slow the progression of their disease, and to support their independent living at home. However, there is a lack of knowledge about the utilization of therapies and aids among community-dwelling PWDs. Objective The aims of the study were a) to describe the utilization of nonpharmacological therapies and aids among community-dwelling PWDs and b) to analyze the factors associated with utilization. Method As part of a cross-sectional study of n=560 caregivers of PWDs in dementia networks throughout Germany, we assessed sociodemographics, clinical variables, and the utilization of nonpharmacological therapies (physiotherapy [PT], occupational therapy [OT]), and aids (sensory, mobility, and others), using face-to-face interviews and questionnaires. Results Approximately every fourth PWD received PT and every seventh PWD received OT. Sensory aids were utilized by 91.1%, personal hygiene aids by 77.2%, mobility aids by 58.6%, and medical aids by 57.7% of the sample. Regression analysis revealed that the utilization of PT and medical aids was associated with comorbidities (odds ratio [OR] 1.17 and OR 1.27, respectively) and that the utilization of OT and sensory aids was associated with age (OR 1.06 and OR 0.95, respectively). Conclusion The utilization of nonpharmacological therapies and aids among community-dwelling people served by dementia networks is more frequent than that reported for people in other settings. This result indicates that PWDs in integrated care models such as dementia networks receive better health care.

[Users of regional dementia care networks in Germany : First results of the evaluation study 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 Alzheimers 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.

Nutzer und Nutzerinnen regionaler Demenznetzwerke in Deutschland

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 Alzheimers 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.

Knowledge evaluation in dementia care networks: a mixed-methods analysis of knowledge evaluation strategies and the success of informing family caregivers about dementia support services

BackgroundIn general, most people with dementia living in the community are served by family caregivers at home. A similar situation is found in Germany. One primary goal of dementia care networks is to provide information on support services available to these caregiving relatives of people with dementia via knowledge management. The evaluation of knowledge management tools and processes for dementia care networks is relevant to their performance in successfully achieving information goals. One goal of this paper was the analysis of knowledge evaluation in dementia care networks, including potential barriers and facilitators, across Germany within the DemNet-D study. Additionally, the impact of highly formalized and less formalized knowledge management performed in dementia care networks was analyzed relative to family caregivers’ feelings of being informed about dementia support services.MethodsQualitative data were collected through interviews with and semi-standardized questionnaires administered to key persons from 13 dementia care networks between 2013 and 2014. Quantitative data were collected using standardized questionnaires. A structured content analysis and a mixed-methods analysis were conducted.ResultsThe analyses indicated that the development of knowledge goals is important for a systematic knowledge evaluation process. Feedback from family caregivers was found to be beneficial for the target-oriented evaluation of dementia care network services. Surveys and special conferences, such as quality circles, were used in certain networks to solicit this feedback. Limited resources can hinder the development of formalized knowledge evaluation processes. More formalized knowledge management processes in dementia care networks can lead to a higher level of knowledge among family caregivers.ConclusionsThe studied tools, processes and potential barriers related to knowledge evaluation contribute to the development and optimization of knowledge evaluation strategies for use in dementia care networks. Furthermore, the mixed-methods results indicate that highly formalized dementia care networks are especially successful in providing information to family members caring for people with dementia via knowledge management.

Care Arrangements in Dementia Care Networks: Findings From the DemNet-D Study Baseline and 1-Year Follow-Up

Objective: This study was conducted to describe care arrangements for persons with dementia (PwDs) who are living at home with the support of a dementia care network (DCN). Method: Data on the utilization of formal and informal support were collected in face-to-face interviews at baseline and 1-year follow-up with PwDs and caregivers receiving support from 1 of 13 DCNs. Results: Men with dementia were supported by twice as many informal caregivers as women (2 vs. 1, respectively, p < .001). Regional differences were found in home-care nursing services, social care groups, companion home services, and day care. The care situations were considered stable by most caregivers. Discussion: DCNs appear to contribute to a high degree of perceived stability in care situations. Future research should investigate possible gender differences in informal support networks. DCNs should continue their efforts in making low-threshold services in rural areas available and accessible.

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

HOW DOES UTILIZATION OF HEALTH CARE SERVICES CHANGE IN PEOPLE WITH DEMENTIA SERVED BY DEMENTIA CARE NETWORKS IN GERMANY: RESULTS OF THE DEMNET-D-STUDY

Background:Over one third of older adults live alone in Western countries and many of them do so with cognitive impairment. For example, in the U.S. 1 out of 7 older adults with Alzheimer’s disease lives alone, a total of 800,000 individuals. Despite this demographic trend, studies of older adults with cognitive impairment tend to recruit study participants living with caregivers, often spouses or adult children. This lack of attention on participants living alone is due, in large part, to difficulties that may arise in recruitment of this group of individuals in research studies. Low levels of participation of older adults living alone constrains our ability to address the overall healthcare needs of people with cognitive impairment and is a public health issue. To address this problem, the purpose of this presentation is to discuss successful methods for recruiting older adults living alone with cognitive impairment. Methods: Lessons were drawn from a qualitative investigation of 27 older adults living alone with a diagnosis of mild cognitive impairment or Alzheimer’s disease (2014-16). A detailed review of investigators’ experiences in recruiting these study participants is presented, including cost issues. Results: Participants were recruited with active strategies. Most participants were recruited through the assistance of administrative and medical staff at clinics. Sixteen participants were recruited after a social worker, an administrator, or a physician introduced the study to them and the investigator contacted them afterwards. Eleven participants were recruited after they received a letter signed by their primary care provider inviting them to join the research followed by a phone-call from the investigator. Remaining participants were recruited through social media and word mouth. Passive strategies such a posting flyers in waiting rooms were unsuccessful. To recruit a more ethnically/racially diverse sample, future strategies include presentations in senior centers and churches by research assistants well connected to their neighborhoods. Conclusions: Because older adults living alone tend to be isolated and wary of fraud, researchers should allocate extra time and resources to create partnerships with medical providers and persons (such as ministers, community leaders) that these elders are likely to trust.