Bernhard Holle

Community-dwelling persons with dementia: What do they need? What do they demand? What do they do? A systematic review on the subjective experiences of persons with dementia

Objectives: Including the perspectives of persons with dementia (PwD) is essential in order to organize care structures for them. With this systematic review, we set out to screen the existing scientific evidence on self-expressions of community-dwelling individuals with dementia in order to provide a research base for developing an intervention for persons in early stages of the disease. The leading research questions for this review are: What needs do PwD living at home express? What are their subjective demands? What do they do to cope with their situation? Methods: We performed a systematic literature review of review publications on subjective experiences of PwD. The publications were analysed using MAXQDA 10 to perform a thematic analysis. Results: We identified 41 relevant reviews, of which 6 met our inclusion criteria. PwD experience the whole range of human emotions. Their needs and demands do not differ significantly from those of other groups of patients with chronic conditions. Coming to terms with the disease and maintaining normality appeared to be major themes. With regard to expectations from the side of professional health care, the need for accompanying, continuous support and counselling appeared to be central. Furthermore, disclosure of diagnosis represents a critical stage for PwD, but our findings indicated that they prefer to be included in this process. Conclusions: PwD are well able to express their needs. They should be included in research since they can provide valuable findings. Furthermore, those findings should be implemented in applied dementia care.

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 6xa0months, and 74% had been treated by a specialist (neurology/psychiatry physician). Only 5% of the sample had no contact with a physician in the 6xa0months preceding the interview. Females showed a lower odds for physician specialist consultations (ORxa0=xa00.641). Users of medical DNs receive greater specialist consultations overall (ORxa0=xa08.370). 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.

Knowledge management in dementia care networks: a qualitative analysis of successful information and support strategies for people with dementia living at home and their family caregivers

OBJECTIVESnStakeholders involved in community dementia support services often work on their own and without coordination with other services. These circumstances can result in a lack of information and support for people with dementia and their family caregivers at home. To increase the coordination between existing support services, so-called Dementia Care Networks (DCNs) have been established. Most of the tasks that are performed in DCNs are based on communication strategies. Therefore, knowledge management (KM) is a key process in these networks. However, few studies have focused on this topic. This study attempted to evaluate KM strategies in DCNs across Germany as part of the DemNet-D study.nnnSTUDY DESIGNnA qualitative interview study design was used.nnnMETHODSnQualitative data were collected during single and group interviews with key persons associated with thirteen DCNs. Interviews were audiotaped and transcribed, and a structured content analysis was conducted. The framework for the analysis was derived from a KM model.nnnRESULTSnInformation dissemination strategies for people with dementia and their informal caregivers based on actively established contacts appear to be more successful than passive strategies. General practitioners often play a key role as external gatekeepers in initiating contact between a network and a person affected by dementia. In this context, case managers can help integrate external stakeholders, such as general practitioners or pharmacists, into DCNs using different KM strategies. The systematic development of common objectives under an agency-neutral leadership seems to be an important aspect of successful KM within DCNs.nnnCONCLUSIONSnThe findings reported here can help DCNs optimize their KM strategies for generating tailored information and support services for people with dementia living at home and their family caregivers. In particular, the identified potential knowledge distribution barriers and facilitators will be of practical use to DCN stakeholders.

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

ABSTRACT 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.

Differences in Case Conferences in Dementia Specific vs Traditional Care Units in German Nursing Homes: Results from a Cross-Sectional Study

OBJECTIVESnTo investigate differences in the provision and performance of case conferences for people with dementia between dementia special care units (DSCUs) and traditional care units (TCUs) in nursing homes. Because DSCUs employ more staff, we expect the likelihood of the provision of case conferences to be higher in DSCUs.nnnDESIGNnObservational cross-sectional study. Residents from DSCUs and TCUs were compared using genetic propensity score matching over all of the observed potential covariates, including the characteristics that served as admission criteria for DSCUs. Because of the multisite structure of the data, clustering was accounted for with a generalized mixed model.nnnSETTINGnDSCUs are defined as units within nursing homes that offer care exclusively to residents with dementia and that charge higher rates for the specialized care provided. TCUs are defined as care units for residents with and without dementia.nnnPARTICIPANTSnA matched sample was drawn out of a convenience sample of 1808 residents from 51 nursing homes. It consisted of 264 residents from 16 DSCUs and 264 residents from 48 TCUs.nnnINTERVENTIONSnNone.nnnMEASUREMENTSnData regarding the provision of case conferences were collected by the nurses using the Dementia Care Questionnaire. Other collected data included challenging behavior (Neuropsychiatric Inventory Questionnaire), mobility (Physical Self-Maintenance Scale), cognitive impairment (Dementia Screening Scale), and sociodemographic information.nnnRESULTSnIn the DSCU group, case conferences were provided to 91% (n = 224) of the residents; in the TCU group, 82.5% (n = 203) received a case conference. After adjusting for clustering, no significant difference between DSCUs and non-DSCUs was found. The topic challenging behaviors was discussed more often in case conferences in TCUs.nnnCONCLUSIONSnCase conferences are a widespread intervention in German nursing homes, including both DSCUs and TCUs. The provision of a case conference is not a special feature of DSCUs.

Low-threshold support for families with dementia in Germany

BackgroundLow-threshold support services are a part of the German health care system and help relieving family caregivers. There is limited information available on how to construct and implement low-threshold support services for people with dementia and their families in Germany. Some studies describe separately different perspectives of experiences and expectations, but there is no study combining all the different perspectives of those involved and taking the arrangements and organisation as well as their opinions on supporting and inhibiting factors into consideration.FindingsThis protocol describes the design of the study on low-threshold support services for families with a person with dementia in two German regions. The aim is to develop recommendations on how to build up these services and how to implement them in a region. A quantitative as well as a qualitative approach will be used. The quantitative part will be a survey on characteristics of service users and providers, as well as health care structures of the two project regions and an evaluation of important aspects derived from a literature search. Group discussions and semi-structured interviews will be carried out to get a deeper insight into the facilitators and barriers for both using and providing these services. All people involved will be included, such as the people with dementia, their relatives, volunteers, coordinators and institution representatives.DiscussionResults of this study will provide important aspects for policymakers who are interested in an effective and low-threshold support for people with dementia. Furthermore the emerging recommendations can help staff and institutions to improve quality of care and can contribute to developing health and social care structures in Germany.

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

ABSTRACT 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.

Care arrangements for community-dwelling people with dementia in Germany as perceived by informal carers – a cross-sectional pilot survey in a provincial–rural setting

The majority of people with dementia live at home, and informal carers assume the role of key care providers, often supported by formal services. The purpose of this pilot study was to assess home-based care arrangements, to illustrate utilisation of formal services over time and to identify factors associated with perceived stability of the care situation from the informal carers perspective. A self-administered questionnaire (D-IVA Instrument for Assessing Home-Based Care Arrangements for People with Dementia) was developed and distributed in a provincial-rural setting in Germany as a cross-sectional survey. Data analysis used descriptive statistics, unbiased conditional inference trees and thematic analysis for open-ended questions. In total, 84 care arrangements were assessed. The majority of participants were direct relatives of the care-dependent person [mostly adult children (48.8%) or spouses (27.4%)]. Formal services were already sought in the first year after onset of memory problems. The most frequently used formal services were home care nursing services (53.0%), day care (49.4%) and respite care (29.6%), whereas 15.5% did not use any type of formal support. Companion home visit, home care nursing service and day care were used over the longest periods of time. The recruitment strategy used in this study may have recruited persons who were relatively more dependent on their informal carers. In this small sample, carers perceived stability of the care situation was high, and this was associated with the country of origin and sex of the person with dementia (P = 0.004 and 0.023 respectively). Most care arrangements consisted of a mix of informal and formal services. However, informal carers assumed prime responsibility. The questionnaire D-IVA proved to be suitable. It remains a challenge to further examine factors associated with perceived stability and to explain the phenomenon in its whole complexity. Further research using the D-IVA should consider applying complementing quantitative measures as well as qualitative methods.

[Users of regional dementia care networks in Germany : First results of the evaluation study DemNet-D].

BACKGROUNDnIn 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.nnnOBJECTIVEnThe 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.nnnMATERIAL AND METHODSnAs 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.nnnRESULTSnA total of 560 PwDs with an average age of 80 years were enrolled in the study. Of the participants approximately 50u2009% had Alzheimers dementia and more than 75u2009% 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.nnnCONCLUSIONnThis 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.ZusammenfassungHintergrundUm Menschen mit Demenz (MmD) passgenaue Versorgungsangebote zu ermöglichen und Schnittstellenproblematiken zu überwinden, rücken kooperative, multiprofessionelle Versorgungsstrukturen wie Demenznetzwerke (DNW) in den Fokus der deutschen Versorgungslandschaft.Ziel der ArbeitZiel der vorliegenden Arbeit ist es, Nutzer und Nutzerinnen von regionalen DNW erstmals umfassend zu charakterisieren und Aussagen bezüglich ihrer sozialen Teilhabe zu treffen, da hierzu bisher keine grundlegenden Daten vorliegen.Material und MethodeEs werden Ergebnisse der Baseline-Erhebung der bundesweiten, multizentrischen, multiprofessionellen Längsschnittstudie DemNet-D zu soziodemografischen und demenzspezifischen Faktoren sowie zur sozialen Teilhabe von MmD beschrieben, die im Rahmen von standardisierten Interviews vor Ort in der eigenen Häuslichkeit erhoben wurden.ErgebnisseDas Durchschnittsalter der 560xa0Teilnehmer und Teilnehmerinnen beträgt 80xa0Jahre. Etwa die Hälfte der Teilnehmenden hat eine Demenz vom Alzheimer-Typ, mehr als drei Viertel der teilnehmenden MmD weisen mindestens eine herausfordernde Verhaltensweise auf. Mehr als die Hälfte der MmD leben mit einem Angehörigen/einer Bezugsperson zusammen. Instrumentelle Alltagsfähigkeiten (IADL) sind stark eingeschränkt, dennoch weist ca. ein Fünftel keine Einstufung in eine Pflegestufe auf. Insgesamt wird von einem eher geringer ausgeprägten Einsamkeitsgefühl und einem höher ausgeprägten Akzeptanzgefühl berichtet, abhängig vom Schweregrad der Demenz.SchlussfolgerungDie Stichprobe spiegelt die Situation ambulant versorgter MmD valide wider. Die Ergebnisse zeigen, dass regionale DNW zur Überwindung von Schnittstellenproblematiken und somit zu einer Versorgungssicherheit und besseren sozialen Integration von Betroffenen beitragen können.AbstractBackgroundIn 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.ObjectiveThe 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 methodsAs 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.ResultsA total of 560 PwDs with an average age of 80 years were enrolled in the study. Of the participants approximately 50u2009% had Alzheimer’s dementia and more than 75u2009% 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.ConclusionThis 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

BACKGROUNDnIn 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.nnnOBJECTIVEnThe 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.nnnMATERIAL AND METHODSnAs 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.nnnRESULTSnA total of 560 PwDs with an average age of 80 years were enrolled in the study. Of the participants approximately 50u2009% had Alzheimers dementia and more than 75u2009% 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.nnnCONCLUSIONnThis 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.ZusammenfassungHintergrundUm Menschen mit Demenz (MmD) passgenaue Versorgungsangebote zu ermöglichen und Schnittstellenproblematiken zu überwinden, rücken kooperative, multiprofessionelle Versorgungsstrukturen wie Demenznetzwerke (DNW) in den Fokus der deutschen Versorgungslandschaft.Ziel der ArbeitZiel der vorliegenden Arbeit ist es, Nutzer und Nutzerinnen von regionalen DNW erstmals umfassend zu charakterisieren und Aussagen bezüglich ihrer sozialen Teilhabe zu treffen, da hierzu bisher keine grundlegenden Daten vorliegen.Material und MethodeEs werden Ergebnisse der Baseline-Erhebung der bundesweiten, multizentrischen, multiprofessionellen Längsschnittstudie DemNet-D zu soziodemografischen und demenzspezifischen Faktoren sowie zur sozialen Teilhabe von MmD beschrieben, die im Rahmen von standardisierten Interviews vor Ort in der eigenen Häuslichkeit erhoben wurden.ErgebnisseDas Durchschnittsalter der 560xa0Teilnehmer und Teilnehmerinnen beträgt 80xa0Jahre. Etwa die Hälfte der Teilnehmenden hat eine Demenz vom Alzheimer-Typ, mehr als drei Viertel der teilnehmenden MmD weisen mindestens eine herausfordernde Verhaltensweise auf. Mehr als die Hälfte der MmD leben mit einem Angehörigen/einer Bezugsperson zusammen. Instrumentelle Alltagsfähigkeiten (IADL) sind stark eingeschränkt, dennoch weist ca. ein Fünftel keine Einstufung in eine Pflegestufe auf. Insgesamt wird von einem eher geringer ausgeprägten Einsamkeitsgefühl und einem höher ausgeprägten Akzeptanzgefühl berichtet, abhängig vom Schweregrad der Demenz.SchlussfolgerungDie Stichprobe spiegelt die Situation ambulant versorgter MmD valide wider. Die Ergebnisse zeigen, dass regionale DNW zur Überwindung von Schnittstellenproblematiken und somit zu einer Versorgungssicherheit und besseren sozialen Integration von Betroffenen beitragen können.AbstractBackgroundIn 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.ObjectiveThe 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 methodsAs 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.ResultsA total of 560 PwDs with an average age of 80 years were enrolled in the study. Of the participants approximately 50u2009% had Alzheimer’s dementia and more than 75u2009% 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.ConclusionThis 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.