Haberstroh, Julia
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Publication Access status: Open Access , Project DECIDE, part 1: increasing the amount of valid advance directives in people with Alzheimer’s disease by offering advance care planning - a prospective double-arm intervention studyBackground Everybody has the right to decide whether to receive specific medical treatment or not and to provide their free, prior and informed consent to do so. As dementia progresses, people with Alzheimer’s dementia (PwAD) can lose their capacity to provide informed consent to complex medical treatment. When the capacity to consent is lost, the autonomy of the affected person can only be guaranteed when an interpretable and valid advance directive exists. Advance directives are not yet common in Germany, and their validity is often questionable. Once the dementia diagnosis has been made, it is assumed to be too late to write an advance directive. One approach used to support the completion of advance directives is ‘Respecting Choices’®—an internationally recognised, evidence-based model of Advance Care Planning (ACP), which, until now, has not been evaluated for the target group of PwAD. This study’s aims include (a) to investigate the proportion of valid advance directives in a memory clinic population of persons with suspected AD, (b) to determine the predictors of valid advance directives, and (c) to examine whether the offer of ACP can increase the proportion of valid advance directives in PwAD. Method We intend to recruit at least N = 250 participants from two memory clinics in 50 consecutive weeks. Of these, the first 25 weeks constitute the baseline phase (no offer of ACP), the following 25 weeks constitute the intervention phase (offer of ACP). The existence and validity of an advance directive will be assessed twice (before and after the memory clinic appointment). Moreover, potential predictors of valid advance directives are assessed. Discussion The results of this study will enhance the development of consent procedures for advance directives of PwAD based on the ACP/Respecting Choices (R) approach. Therefore, this project contributes towards increasing the autonomy and inclusion of PwAD and the widespread acceptance of valid advance directives in PwAD.Source Type:Article3 12 - Some of the metrics are blocked by yourconsent settings
Publication Access status: Metadata only , Project DECIDE, part II: decision-making places for people with dementia in Alzheimer’s disease: supporting advance decision-making by improving person-environment fitBackground The UN Convention on the Rights of Persons with Disabilities, and the reformed guardianship law in Germany, require that persons with a disability, including people with dementia in Alzheimer’s disease (PwAD), are supported in making self-determined decisions. This support is achieved through communication. While content-related communication is a deficit of PwAD, relational aspects of communication are a resource. Research in supported decision-making (SDM) has investigated the effectiveness of different content-related support strategies for PwAD but has only succeeded in improving understanding, which, although one criterion of capacity to consent, is not sufficient to ensure overall capacity to consent. The aim of the ‘spatial intervention study’ of the DECIDE project is to examine an innovative resource-oriented SDM approach that focuses on relational aspects. We hypothesise that talking to PwAD in their familiar home setting (as opposed to a clinical setting) will reduce the complexity of the decision-making process and enhance overall capacity to consent. Methods People with a suspected or confirmed diagnosis of dementia in Alzheimer’s disease will be recruited from two memory clinics ( N = 80). We will use a randomised crossover design to investigate the intervention effect of the decision-making place on capacity to consent. Besides reasoning capacity, which is part of overall capacity to consent and will be the primary outcome, various secondary outcomes (e.g., other aspects of capacity to consent, subjective task complexity, decisional conflict) and suspected moderating or mediating variables (e.g., meaning of home, demographic characteristics) will be assessed. Discussion The results of the study will be used to develop a new SDM strategy that is based on relational resources for PwAD. If a change in location achieves the anticipated improvement in capacity to consent, future research should focus on implementing this SDM strategy in a cost-effective manner in clinical practice. Trial registration : DRKS00030799 .Source Type:Article1 - Some of the metrics are blocked by yourconsent settings
Publication Access status: Metadata only , The Role of Different Aspects of Communication Behavior in the Assessment of Capacity to ConsentAny medical treatment that interferes with physical integrity requires the informed consent of a patient capable of such consent. For people with dementia, the capacity to consent is questioned even in the early course of the disease. Particularly diagnostic instruments like the MacArthur Competence Assessment Tool for Treatment (MacCAT-T) often deny people with dementia the capacity to consent because of high confounding of the results with patients’ verbal abilities. To date, it remains unclear whether not only verbal but also nonverbal communication is associated with assessments of capacity to consent. The current study investigates associations between patients’ verbal and nonverbal communication behaviors as assessed by the measure for Communication Behavior in People with Dementia in Ambulant Settings (CODEM amb ) and capacity to consent as assessed by the MacCAT-T. We expected the strongest positive associations for verbal communication behaviors compared to nonverbal communication behaviors. Data of N = 43 patients with dementia ( n = 8 capable of consent) were collected at two different German psychiatric clinics. The results show small to moderate correlations between the overall scores of CODEM amb and MacCAT-T. As expected, correlations were strongest for the verbal CODEM amb subscale. The results support current findings on the dependency of the MacCAT-T on verbal communication. Based on the findings, the discussion addresses how people with dementia can be enabled to make self-determined medical treatment decisions.Source Type:Article3
