Guide Über den Umgang mit Menschen (German Edition)

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Table of contents

We assume that there will be differences with respect to the care provided between segregative and integrative living units, as well as small- and large-scale units. Therefore, we will investigate these as fixed groups.

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Based on certain other key variables ownership, costs, special reimbursements, staff we aim to build further possible groups with similar characteristics. Are there any differences between the groups regarding the interventions provided? Are there differences between the results of the whole population and the groups? Since the study provides longitudinal data, we will also be able to answer the questions:. If they change, are there differences in associated factors and covariates between the two points of time so that time needs to be considered as an influencing factor?

The DemenzMonitor is intended to be an ongoing observational descriptive longitudinal study to be repeated every year. Nursing homes across Germany are invited to participate in the study. In , more than 12, nursing homes existed in Germany [ 26 ]. Because it is not feasible to contact every institution, the study will be published in high-circulation professional journals, newsletters, and the websites of nursing and geriatric information services.

It will also be presented at national nursing conferences. It is assumed that the motivation of nursing homes to participate will be strongly driven by the benefits they will receive from the study.

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Therefore, the participating institutions will receive an individual report with living-unit- and resident-related results. Accurate data collection requires a considerable amount of time and motivation by participating institutions and their employees; therefore, participation is voluntary. If informed consent is given, we propose a whole-population survey of the participating living units.

The goal is to involve the institutions for as long as possible to gather longitudinal data. However, because participation is voluntary, the institutions will decide how long they will participate and how many data collections will be performed. It is assumed that a number of institutions will decline to participate repeatedly. Therefore, new institutions will be recruited and involved each year. After each data collection cycle, recruitment rates for the proportion of participating institutions in every federal state will be calculated to get an idea of representativeness.

The framework is based on the concept of multi-level social epidemiology frameworks [ 27 ]. In this paradigm, causality is assumed to be linear with proximate, individual risk factors, whereas social epidemiology frameworks account for the joint and dynamic influence of social, environmental, and biological factors that affect health [ 28 ]. Eco-epidemiology is grounded in the principle of ecologism, which seeks to understand phenomena in relation to the boundaries of context rather than seeking universal explanations that may be context-free [ 30 ].

The framework developed for the study refers to the work of Lawton and Nahemow [ 31 , 32 ], which focuses on behavior and quality of life. The central thesis of this work is that competencies of the individual, the environment, and the interaction of the individual with the environment influence human behavior and quality of life.

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According to ecological frameworks, the DemenzMonitor framework relies on two dimensions to clarify the complexity of social realities: environment- and person-focused dimensions. The environment-focused dimension comprises physical and social environments. The person-focused dimension includes demographics, function, and dementia-specific characteristics such as cognition, behavior, and quality of life. To assess the different dimensions, it was necessary to develop a new instrument that covers three levels: the level of the institution, the living units, and the residents.

Based on the conceptual framework, we conducted a literature search to identify existing instruments or measurements that are suitable to assess the different aspects of the dimensions. This search identified instruments for person-related aspects care dependency, cognitive impairment, challenging behavior, quality of life. As we did not find any suitable instruments relating to the aspects of the social and physical environment dimension, new items had to be developed.

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The development of these items was conceptually based on the German guidelines for the care of people with dementia and challenging behavior in nursing homes [ 6 ]. Additionally, we conducted a systematic literature review on the development, implementation and use of this interventions in the practice [ 7 ]. Focus groups and quantitative expert ratings were also conducted to achieve content and face validity [ 33 , 34 ].

A multi-method pretest with intended users revealed problems with comprehensibility and practicability [ 35 , 36 ]. Each step of the instrument development and testing followed a revision of the instrument. The developed instrument was applied in a pilot study in May The new instrument contains three questionnaires divided into several sections. At both the nursing home and living unit levels, the questionnaires focus on environmental aspects e. The provision of care is operationalized at the level of the living unit and the residents.

The questionnaires can be obtained on request. All assessments used are proxy-rating instruments and administered by the professional caregiver who is most familiar with the respective residents. Quality of life is a complex and multidimensional concept that is influenced by both individual and environmental factors [ 37 , 38 ].

Moreover, the definition of quality of life involves a subjective component. For this reason, self-reports are considered the gold standard [ 39 , 40 ]. However, communication, memory, and cognitive impairments hamper the evaluation of self-reported quality of life in people with dementia, and the reliability and validity of self-reported quality of life is questioned in the literature [ 41 ].

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  4. Therefore, specific proxy-rating instruments for people with dementia have been developed. It is available in German and shows satisfactory psychometric properties in the German translation [ 43 , 44 ]. Qualidem assesses nine domains of quality of life, including 37 indicative and contraindicative items with four possible responses i. Responses to these items determine the subscales: care relationship, positive affect, negative affect, restless or tense behavior, positive self-image, social relations, social isolation, feeling at home, and something to do. In the case of severe dementia Global Deterioration Scale 7 , six subscales can be applied using 18 of the 37 items [ 45 ].

    To ensure reliability, Qualidem should be administered by two professional caregivers [ 42 ]. For this study, the institutions were informed of and requested to follow this recommendation.

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    Challenging behavior is also a complex and multidimensional construct [ 46 ]. In general, behaviors ranging from aggressive to apathetic are distinguished [ 6 ]. Several instruments exist to assess challenging behavior in residents with dementia.

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    It comprises 12 domains: delusion, hallucination, depression, anxiety, euphoria, aggression, apathy, disinhibition, irritability, aberrant motor behavior, sleep problems, and eating disorders. The calculations use either the severity score for each domain or the total score, which ranges from 0 to The clinical form of the NPI was chosen for feasibility reasons. Data on diagnosis of dementia are obtained from nursing home records. There are several ways to assess cognitive impairment in study participants [ 49 ]. For practical reasons, a MMSE cannot be performed for this study.

    However, in several nursing homes, a MMSE is performed regularly as a standard procedure. To gather more information about the cognitive status of residents, two other assessment instruments are part of the DemenzMonitor questionnaire.

    The FAST scale includes seven major functional levels 1—7 operationalized by 16 items that are concordant with the corresponding global level of cognition and functional capacity of the Global Deterioration Scale [ 54 ]. The DSS was developed in German, shows satisfactory psychometric properties, and can differentiate among residents with severe dementia [ 53 ].

    It was chosen because it is a simple and economic screening instrument that can be applied by nurses and is feasible for screening a large number of residents. Furthermore, it allows comparisons with results from national studies. The instrument comprises a series of seven items and includes two domains of cognitive functioning: memory and orientation. The total score ranges from 0 to 14; a higher score indicates stronger impairment. The PSMS assesses self-maintaining and instrumental activities of daily living, such as in continence, requiring assistance with feeding, getting dressed, personal hygiene, mobility, and bathing.

    The items are rated on a 1—5 scale, with more points indicating greater dependency.

    The PSMS is a valid and reliable measure [ 55 ] and is recommended on the basis of an expert consensus [ 56 ]. The health care staff will collect data from residents. Therefore, written informed consent must be secured. The residents or their registered legal representatives must be informed of the purpose of the study and the conditions of participation.