Margareta Halek

Scalability and internal consistency of the German version of the dementia-specific quality of life instrument QUALIDEM in nursing homes - a secondary data analysis

BackgroundQuality of life (Qol) is a widely selected outcome in intervention studies. The QUALIDEM is a dementia-specific Qol-instrument from The Netherlands. The aim of this study is to evaluate the scalability and internal consistency of the German version of the QUALIDEM.MethodsThis secondary data analysis is based on a total sample of 634 residents with dementia from 43 nursing homes. The QUALIDEM consists of nine subscales that were applied to a subsample of 378 people with mild to severe dementia and six consecutive subscales that were applied to a subsample of 256 people with very severe dementia. Scalability, internal consistency and distribution scores were calculated for each predefined subscale using the Mokken scale analysis.ResultsIn people with mild to severe dementia, seven subscales, care relationship, positive affect, negative affect, restless tense behavior, positive self-image, social relations and feeling at home, were scalable (0.31 ≤ H ≤ 0.65) and internally consistent (Rho ≥ 0.62). The subscales social isolation (H = 0.28) and having something to do (H = 0.18) were not scalable and exhibited insufficient reliability scores (Rho ≤ 0.53). For people with very severe dementia, five subscales, care relationship, positive affect, restless tense behavior, negative affect and social relations, were scalable (0.33 ≤ H ≤ 0.65), but only the first three of these subscales showed acceptable internal consistency (Rho 0.59 – 0.86). The subscale social isolation was not scalable (H = 0.20) and exhibited poor internal consistency (Rho = 0.42).ConclusionsThe results show an acceptable scalability and internal consistency for seven QUALIDEM subscales for people with mild to severe dementia and three subscales for people with very severe dementia. The subscales having something to do (mild to severe dementia), negative affect (very severe dementia), social relations (very severe dementia) and social isolation (both versions) produced unsatisfactory results and require revision.

The effects of dementia care mapping on nursing home residents’ quality of life and staff attitudes: design of the quasi-experimental study Leben-QD II

BackgroundThe main objective of care for people with dementia is the maintenance and promotion of quality of life (Qol). Most of the residents in nursing homes have challenging behaviors that strongly affect their Qol. Person-centered care (PCC) is an approach that aims to achieve the best possible Qol and to reduce challenging behaviors. Dementia Care Mapping (DCM) is a method of implementing PCC that has been used in Germany for several years. However, there are no data on the effectiveness of DCM or the challenges of implementation of DCM in German nursing homes.Methods/designIn this quasi-experimental non-randomized cluster-controlled study, the effects of DCM will be compared to 2 comparison groups. 9 nursing homes will take part: 3 will implement DCM, 3 will implement a comparison intervention using an alternative Qol assessment, and 3 have already implemented DCM. The main effect outcomes are Qol, challenging behaviors, staff attitudes toward dementia, job satisfaction and burnout of caregivers. These outcomes will be measured on 3 data points. Different quantitative and qualitative data sources will be collected through the course of the study to investigate the degree of implementation as well as facilitators of and barriers to the implementation process.DiscussionThis study will provide new information about the effectiveness of DCM and the implementation process of DCM in German nursing homes. The study results will provide important information to guide the national discussion about the improvement of dementia-specific Qol, quality of care in nursing homes and allocation of resources. In addition, the study results will provide information for decision-making and implementation of complex psychosocial interventions such as DCM. The findings will also be important for the design of a subsequent randomized controlled trial (e.g. appropriateness of outcomes and measurements, inclusion criteria for participating nursing homes) and the development of a successful implementation strategy.Trial registrationCurrent Controlled Trials ISRCTN43916381.

Linguistic validation and reliability properties are weak investigated of most dementia-specific quality of life measurements—a systematic review

OBJECTIVE For people with dementia, the concept of quality of life (Qol) reflects the diseases impact on the whole person. Thus, Qol is an increasingly used outcome measure in dementia research. This systematic review was performed to identify available dementia-specific Qol measurements and to assess the quality of linguistic validations and reliability studies of these measurements (PROSPERO 2013: CRD42014008725). STUDY DESIGN AND SETTING The MEDLINE, CINAHL, EMBASE, PsycINFO, and Cochrane Methodology Register databases were systematically searched without any date restrictions. Forward and backward citation tracking were performed on the basis of selected articles. RESULTS A total of 70 articles addressing 19 dementia-specific Qol measurements were identified; nine measurements were adapted to nonorigin countries. The quality of the linguistic validations varied from insufficient to good. Internal consistency was the most frequently tested reliability property. Most of the reliability studies lacked internal validity. CONCLUSION Qol measurements for dementia are insufficiently linguistic validated and not well tested for reliability. None of the identified measurements can be recommended without further research. The application of international guidelines and quality criteria is strongly recommended for the performance of linguistic validations and reliability studies of dementia-specific Qol measurements.

Process evaluation of the implementation of dementia-specific case conferences in nursing homes (FallDem): study protocol for a randomized controlled trial

BackgroundChallenging behaviors exhibited by individuals with dementia might result from an unmet need that they cannot communicate directly due to cognitive restrictions. A dementia-specific case conference represents a promising means of analyzing and exploring these unmet needs. The ongoing FallDem study is a stepped-wedged, cluster-randomized trial evaluating the effects of two different types of dementia-specific case conferences on the challenging behaviors of nursing home residents. This study protocol describes the process evaluation that is conducted, along with the FallDem study.The goal of the process evaluation is to explain potential discrepancies between expected and observed outcomes, and to provide insights into implementation processes and recruitment strategies, as well as the contexts and contextual factors that promote or inhibit the implementation of dementia-specific case conferences.Methods/DesignThe process evaluation will use a mixed-method design comprising longitudinal elements, in which quantitative and qualitative data will be gathered. Qualitative data will be analyzed using content analysis, documentary analysis and a documentary method. Quantitative data (standardized questionnaires) will be analyzed using descriptive statistics. Both types of data will complement one another and provide a more comprehensive picture of the different objects under investigation.DiscussionThe process evaluation will allow for a comprehensive understanding of the changing processes and mechanisms underlying the ‘black box’ of the complex intervention of the FallDem study. These findings will provide practical knowledge regarding issues related to the implementation of dementia-specific case conferences in nursing homes.Trial registrationCurrent Controlled Trials identifier: ISRCTN20203855, registered on 10th July 2013.

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

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.

Measuring the quality of life of people with dementia in nursing homes in Germany – the study protocol for the Qol-Dem Project

Background: QUALIDEM is a standardized dementia-specific quality of life (Qol) measurement, which was developed and validated in the Netherlands. A German version has been available since 2008. This study protocol describes the design and methodology for the quality of life of people with dementia (Qol-Dem) project. Objective: This project aims to evaluate the reliability and validity of the German version of the QUALIDEM. Method: Due to the lack of both a universal definition of Qol and of standards to verify the validity of Qol measurements, this study is divided into three phases. The aim of the first theoretical phase is the development of a dementia-specific Qol model as a result of a meta-synthesis of qualitative studies. The second empirical phase consists of the three following steps: (a) an investigation of the scalability and internal consistency of the measure, (b) an evaluation of the interrater and intrarater reliability, and (c) an extensive evaluation of the validity of the QUALIDEM. The resulting Qol model (phase 1) will be used for the selection of appropriate comparators for validity testing. In the third phase, the QUALIDEM will be adapted, if necessary, based on the knowledge generated in the first two phases. Conclusion: The findings of the Qol-Dem project should deliver an accurate assessment of the psychometric properties of the German version of the QUALIDEM. The results will contribute to the further development of the instrument. Furthermore, the results will contribute to the theoretical development of the concept of Qol among people with dementia.

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

BACKGROUND AND OBJECTIVE caring for people with dementia presents a growing challenge in an ageing society. We urgently need innovative future-oriented concepts of evidence-based health care which would improve the care for people with dementia, even under adverse circumstances. The German Center for Neurodegenerative Diseases (DZNE) in Witten is willing to meet this challenge. FOCUS OF RESEARCH the DZNE in Witten supports interdisciplinary research and houses three scientific work groups acting in close co-operation and focusing on 1) care structures, 2) care interventions, and 3) knowledge circulation and implementation research. A comprehensive project plan focuses on people with dementias perspective in the early stages of the disease. It intends to investigate their needs, requirements und activities as a basis for the development of appropriate concepts. Apart from specific research questions methodological issues arising from the complexity of the subject are of interest. DISCUSSION the institutional funding of the location offers an unparalleled opportunity to plan long-term and more complex projects. This might lead to a close co-operation with the Witten/Herdecke University, where health care research is of particular relevance.

Multidimensional assessment of challenging behaviors in advanced stages of dementia in nursing homes—The insideDEM framework

Assessment of challenging behaviors in dementia is important for intervention selection. Here, we describe the technical and experimental setup and the feasibility of long‐term multidimensional behavior assessment of people with dementia living in nursing homes.

Item distribution, internal consistency and inter-rater reliability of the German version of the QUALIDEM for people with mild to severe and very severe dementia

BackgroundThe QUALIDEM is a dementia-specific Quality of life (Qol) instrument that is recommended for longitudinal studies and advanced stages of dementia. Our study aimed to develop a user guide for the German version of the QUALIDEM and to determine the item distribution, internal consistency and inter-rater reliability (IRR) of the German QUALIDEM.MethodsA user guide was developed based on cognitive interviews with ten professional caregivers and a focus group with six professional caregivers. The item distribution, internal consistency and IRR were evaluated through a field test including n = 55 (mild to severe dementia) and n = 36 (very severe dementia) residents from nine nursing homes. Individuals with dementia were assessed four times by blinded proxy raters.ResultsA user guide with instructions for the application of the QUALIDEM and definitions and examples for each item was created. Based on the single-measure intra-class correlation coefficient (ICC for absolute agreement), we observed strong IRR for nearly all of the QUALIDEM subscales, with ICCs of at least 0.79. A lower ICC (ICC = 0.64) was only obtained for people with very severe dementia on the ‘negative affect’ subscale.ConclusionsThe IRR improved based on the application of the QUALIDEM user guide developed in this study. We demonstrated a sufficient IRR for all subscales of the German version of the QUALIDEM, with the exception of the ‘negative affect’ subscale in the subsample of people with very severe dementia. The item distribution and internal consistency results highlight the need to develop new informative items for some subscales.

Interne Konsistenz und Konstrukt­validität des Quality of Life in Alzheimer's Disease (QoL-AD) proxy Instruments

Background: The maintenance and promotion of Quality of Life (QoL) of people with dementia is a major outcome in intervention studies and health care. The Quality of Life Alzheimers Disease (QoL-AD) is an internationally recommended QoL measurement also available in German language. Until now, only a few results on the psychometric properties of the German QoL-AD were available. Objective: Evaluation of internal consistency and construct validity of the QoL-AD proxy. Method: A principal component analysis (secondary data analysis) of the 13 QoL-AD items was carried out based on the total sample of 234 people with dementia from nine nursing homes in Germany. Subsequently, the internal consistency of the identified factors was examined using Cronbachs alpha. Results: Two factors physical and mental health and social network were determined. Both factors explain 53 % of the total variance. The stability of both factors was validated in two sensitivity analyses. The internal consistency is good for both factors with a Cronbachs alpha of 0.88 (physical and mental health) and 0.75 (social network). Conclusion: The QoL-AD proxy allows the assessment of two relevant health-related QoL domains of people with dementia. However, in future studies especially the inter-rater reliability of the QoL-AD proxy has to be examined.