How Does Utilization of Health Care Services Change in People with Dementia Served by Dementia Care Networks? Results of the Longitudinal, Observational DemNet-D-Study.

BACKGROUND: There is no common definition for the Dementia Care Network (DCN). They are heterogeneous and there is no general, longitudinal evidence for the effects of DCN. OBJECTIVE: We describe changes in utilization of health services by people served by dementia care networks in Germany and factors associated with those changes over time. METHODS: Primary data was assessed in 560 people with dementia (PwD) and their caregivers supported by DCN in Germany; sociodemographic and clinical variables, utilization of services; DCN were characterized according to governance. The design: observational study with face-to-face interviews at two time points over a period of one year. Data was assessed via semi-structured interviews at the participants' homes. RESULTS: Utilization of health services in this study is consistently higher than reported for the general population and does not significantly change over time. The strongest predictor of utilization of any service after one year was the use of this service at baseline (OR from 3.23 to 44.16). Higher activities of daily functioning increased the chances to utilize specialist physicians (OR = 1.32; 95% -CI: 1.08-1.63) or occupational therapy (OR = 1.24; 95% -CI: 1.02-1.50) significantly. Being a female decreased chances to utilize specialist physicians (OR = 0.57; 95% -CI: 0.37-0.87) and increased the chances to utilize no services (OR = 2.08; 95% -CI: 1.29-3.33). CONCLUSION: While health care acknowledges the importance and benefits of dementia care networks (i.e., in Germany, the results were considered in new German legislation (SGB XI)), further research is needed to define this kind of service delivery to facilitate comparison as well as promote evidence-based implementation.

Quality of life in persons with dementia using regional dementia care network services in Germany: a one-year follow-up study.

BACKGROUND: The majority of individuals with dementia live in the community; thus, regional dementia care networks are becoming increasingly more important for the provision of care. To date, four different types of dementia care networks have been identified in Germany (stakeholder, organisation, hybrid, mission); however, the effect on the quality of life of persons with dementia using such network services has not yet been examined. Moreover, the possible differences in the effect on the quality of life among the four types of dementia care networks have not been investigated. Therefore, the aim of the present study was to describe the changes over time in the quality of life of persons with dementia, assessing the association with the different types of dementia care networks. METHODS: Within the DemNet-D study, face-to-face interviews with persons with dementia and their primary caregivers were conducted to collect data of typical outcome parameters, such as quality of life (Quality of Life Alzheimers Disease: QoL-AD), sociodemographic data, social index (Scheuch-Winkler), depression (Geriatric Depression Scale: GDS), challenging behaviour (Cohen-Mansfield Agitation Inventory: CMAI), capacities of daily living (Instrumental Activity of Daily Living: IADL), impairment due to dementia (FAST), and caregiver burden. In addition to these parameters, the differences in quality of life scores among the four types of dementia care networks were analysed using multi-level analysis. RESULTS: In total, 407 persons with dementia (79.1 years; 60.1% female) and their caregivers were included in the analysis. Over 75% of the persons with dementia showed moderate to (very) severe impairments of dementia and at least one challenging behaviour. At baseline, 60.6% had a low social index. Quality of life was stable over one-year on a level slightly above average (baseline 29.1; follow-up 28.7). Multi-level analyses (p <  0.001; R2 = 0.183) show that persons with dementia with higher QoL-AD scores at baseline were associated with a decline at follow-up. No significant differences among the types of dementia care networks were found. CONCLUSION: Users of dementia care network services showed a stable QoL-AD score over time at a level slightly above average, indicating no decrease or worsening over time as expected. Therefore, dementia care network services can be considered as a beneficial model of care in terms of the quality of life of persons with dementia, regardless of their special organisational type.

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.

How do people with dementia utilise primary care physicians and specialists within dementia networks? Results of the Dementia Networks in Germany (DemNet-D) study.

Outpatient dementia healthcare is predominantly fragmented, and dementia networks (DNs) represent an integrated care concept to overcome this problem. Little is known about the patients of these networks with regard to utilisation of physicians and associated factors. We interviewed 560 caregivers of people with dementia in 13 different DNs in Germany in 2013 and assessed socio-demographics, clinical data and physician utilisation. Networks were categorised in predominantly medical DNs and community-oriented DNs. Descriptive and multivariate statistical models were used to identify associated factors between DNs and users' data. Overall, the users of networks received high rates of physician care; 93% of the sample stated at least one contact with a primary care physician within the last 6 months, and 74% had been treated by a specialist (neurology/psychiatry physician). Only 5% of the sample had no contact with a physician in the 6 months preceding the interview. Females showed a lower odds for physician specialist consultations (OR = 0.641). Users of medical DNs receive greater specialist consultations overall (OR = 8.370). Compared to the German general population and people with dementia in other settings, users of DNs receive physician care more regularly, especially with regard to the consultations of neurologist/psychiatrists. Therefore, DNs seem to perform a supportive role within the integration of physician healthcare. More research is needed on the appropriate relationship between the needs of the people with dementia and utilisation behaviour.

[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.

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.

[Regional Dementia Care Networks in Germany--results from the DemNet-D-Study regarding the quality of life of their users]. / Regionale Demenznetzwerke in Deutschland. Ergebnisse der DemNet-D-Studie zur Lebensqualität der Nutzer(innen).

BACKGROUND: Regional dementia care networks become more and more important in the care for community-dwelling persons with dementia (PwD). However, the quality of life of PwD, served by dementia care networks, has not been investigated yet. It also remains unclear if there are differences between urban and rural dementia care networks. This study therefore aims at investigating the quality of life of PwD using this care model, also regarding possible regional differences. METHODS: Within the DemNet-D-Study, PwD and their primary caregivers were interviewed using typical outcome parameters (quality of life: QoL-AD, depression: GDS, challenging behaviour: CMAI, capacities of daily living: IADL, caregiver burden: BIZA-D). In addition to these parameters, regional differences were analysed using multi-level-analysis. RESULTS: In total, 560 PwD (79.7 years; 57.0 % female) and their caregivers participated in the study. Both self- and proxy-rated quality of life is on a moderate level. The analysis shows a sufficient explanation of the quality of life. (self: p<0.001, R2=0.493; proxy: p<0.001, R2=0.406). Higher quality of life was found for PwD living together with their care givers and for those PwD with higher capacities of daily living. Regional (urban vs. rural) differences could not be found. CONCLUSION: The quality of life of community-dwelling PwD using regional dementia care networks is comparable to those in other studies of outpatient dementia care. Further investigation should be carried out regarding different types of dementia care networks.

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.

[Gerontopsychiatry in the community--results of a gerontopsychiatric outpatient network]. / Gerontopsychiatrie in der Gemeinde--Ergebnisse eines gerontopsychiatrischen Verbundsystems.

OBJECTIVE: Evaluation of a three-year pilot project which aims to improve the quality of care of gerontopsychiatric patients. The project goal was to expand regionally organized outpatient services. METHODS: We examined the profile (n=1004) and course (n=790) of patients treated at the Kaufbeuren regional Gerontopsychiatric Centre on the basis of sociodemographic, clinical, and care-requirement variables. RESULTS: There was a diagnostic predominance of dementia and depression. During the running time of the pilot project, only 13 % of the patients had to be admitted to inpatient care. CONCLUSIONS: The results suggest that the quality of gerontopsychiatric care improves through consistent efforts that are outpatient-oriented, mobile and multiprofessionally organized.