Versorgungsnahe Demenzforschung ermöglichen – Fragestellungen im Deutschen Zentrum für Neurodegenerative Erkrankungen an der Universität Witten/Herdecke

Bartholomeyczik, Sabine; Holle, Bernhard; Riesner, Christine; Halek, Margareta; Vollmar, Horst Christian

doi:10.1016/j.zefq.2010.07.042

Cited by 3 publications

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“…The authors of this review are dementia researchers focusing on health-care services. The aim of our research is to develop and evaluate strategies to support PwD and their families, and social inclusion is one objective of our research (Bartholomeyczik et al , 2010). To investigate how social inclusion of PwD has been researched, this paper reports on an integrative review that analysed qualitative and quantitative studies on social inclusion and exclusion of PwD.…”

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confidence: 99%

Social inclusion of people with dementia – an integrative review of theoretical frameworks, methods and findings in empirical studies

et al. 2019

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The social inclusion of people with dementia (PwD) is recognised as a global goal of legislation, societal initiatives and service provision. Ensuring the social inclusion of PwD in these areas implies that its dimensions and domains are clear and unambiguous. However, the concept of social inclusion as it is currently used by researchers and practitioners is often vague or acts as a container concept for a variety of different approaches. This paper reports on an integrative review that analysed qualitative and quantitative studies on social inclusion and exclusion of PwD. It focused not only on the empirical results of the included studies but also on the theoretical embedding and methodological approaches to the concept of social inclusion and exclusion. We find that empirical studies on the social inclusion of PwD are scarce and largely characterised by a lack of or inconsistent conceptualisation. Against this background, the operationalisation of the concept and the assessment of the individual aspects of social inclusion with standardised instruments seem to be premature. Substantial theoretical and methodological work is needed to guide research on the social inclusion of PwD. The empirical results show that relationships with other people and being integrated into social networks are essential aspects of social inclusion. Likewise, the strategies and attitudes of caring persons can help to create or reinforce exclusion.

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Section: Introductionmentioning

confidence: 99%

Social inclusion of people with dementia – an integrative review of theoretical frameworks, methods and findings in empirical studies

et al. 2019

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“…Health care service research aims to evaluate care strategies by obtaining an understanding of the causal factors in improving dementia-related outcomes for individuals living in nursing homes [ 1 ]. It is self-evident that a valid method to ascertain a case is a prerequisite for any study [ 2 ].…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2016

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BackgroundThere 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.MethodsWe 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.ResultsWe 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.ConclusionPragmatic 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.Electronic supplementary materialThe online version of this article (doi:10.1186/s12877-016-0249-7) contains supplementary material, which is available to authorized users.

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Stable Self-Concepts and Flexible Coping Strategies of People with Dementia Attending Dementia Self-Help Groups in Germany

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Panke-Kochinke

Advances in Psychology, Mental Health, and Behavioral Studies

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In this chapter, results from the qualitative longitudinal Selbstbestimmung und Intervention (SEIN) study conducted at the DZNE site in Witten are presented and discussed against the background of a previously conducted systematic review of the subjective needs, demands, and coping strategies of community-dwelling people with dementia. The objective of the study was to examine how participants of dementia self-help groups in the early and middle stages of the condition cope with their illness. A phenomenological approach with a life-course perspective served as the framework for the study. The findings suggest that a person's self-concept is not changed by dementia but instead adapts over the trajectory of the illness. Struggling between external control (defence against stigmatization) and external protection (being taken seriously), and aiming for “Inner Security” were central concerns for the participants. Biographical background and social network are determining factors in the development and use of coping strategies.

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Versorgungsnahe Demenzforschung ermöglichen – Fragestellungen im Deutschen Zentrum für Neurodegenerative Erkrankungen an der Universität Witten/Herdecke

Cited by 3 publications

References 56 publications

Social inclusion of people with dementia – an integrative review of theoretical frameworks, methods and findings in empirical studies

Social inclusion of people with dementia – an integrative review of theoretical frameworks, methods and findings in empirical studies

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

Stable Self-Concepts and Flexible Coping Strategies of People with Dementia Attending Dementia Self-Help Groups in Germany

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