Project DECIDE, part II: decision-making places for people with dementia in Alzheimer's disease: supporting advance decision-making by improving person-environment fit.

BACKGROUND: 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 .

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 study.

BACKGROUND: 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. Trial Registration DRKS, DRKS00026691, registered 15th of October 2021, https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00026691.

[Emotional robots in a nursing context : Empirical analysis of the present use and the effects of Paro and Pleo]. / Emotionale Roboter im Pflegekontext : Empirische Analyse des bisherigen Einsatzes und der Wirkungen von Paro und Pleo.

BACKGROUND: It has been questioned by researchers in robotics as well in the general public to what extent companion-type robots can support the elderly with the fulfillment of their psychological and social needs. Although these robots have already been used in care settings in Germany, research has referred little to this practical experience in order to analyze their impact and benefit. To start to close this gap, the current article reports on the current use of companion-type robots in care settings, on the effects reported by professional caregivers as well as on the role of psychosocial needs in the acceptance and use of companion-type robots by the elderly. MATERIAL AND METHODS: In the first study, 30 professional caregivers with experience in the use of the robot seal Paro in care settings were interviewed regarding Paro's application and the observed effects on their clients. In the second study, three case examples are presented from an interaction study in which vulnerable elderly persons had the robot dinosaur Pleo at their disposal for a maximum period of 15 days. RESULTS: Paro is used very flexibly in a variety of settings and with a broad range of user groups (study 1). The reported psychosocial effects were mainly positive but short term. The case examples (study 2) show that psychosocial needs can both foster or hinder robot acceptance and use. They also emphasize the important role of caregivers in the interaction between the elderly and emotional robots in the context of eldercare. CONCLUSION: The beneficial and ethical use of companion-type robots in care settings demands a high commitment on the part of the caregivers. Given this prerequisite, emotional robots can be a valuable therapeutic tool.

Subarachnoid hemorrhage patients' fears of recurrence are related to the presence of posttraumatic stress disorder.

BACKGROUND: Subarachnoid hemorrhage (SAH) patients illustrate a chronic fear of recurrence. A third of patients develop posttraumatic stress disorder (PTSD) after SAH, and PTSD after other conditions is associated with a more negative outlook on life. OBJECTIVE: We examined whether recurrence fears are related to PTSD and whether this is associated with the patients making more negative health appraisals. We also examined the helpfulness of current treatments. METHODS: Two SAH samples were generated. Sample 1 (n = 82) was assessed 13 months after ictus for PTSD, cognition, fear of recurrence, and beliefs concerning future health. Sample 2 (n = 60) was assessed 18 months after ictus for PTSD and to determine how much current treatments increased their confidence about not having another SAH. RESULTS: Thirty-four percent of sample 1 had PTSD. Although clinically and cognitively comparable, PTSD patients feared recurrence more and were comparatively more pessimistic about their chances of further SAH. Thirty-six percent of sample 2 had PTSD. These most fearful patients reported finding current treatments the least helpful. CONCLUSION: Fear of recurrence after SAH is related to PTSD. Participants with PTSD were more pessimistic about their future health. Treatment for PTSD could alleviate fears of SAH recurrence and promote better outcome.

What is the cause of post-traumatic stress disorder following subarachnoid haemorrhage? Post-ictal events are key.

BACKGROUND: Post-traumatic stress disorder (PTSD) is common after subarachnoid haemorrhage (SAH) and causes poor outcome. Knowing which SAH events cause the stress leading to PTSD development could allow for their severity, and so the chances of PTSD, to be reduced. The dramatic nature of SAH onset has meant ictal events have been the presumed cause. Frequent loss of consciousness (LOC) at ictus, and presumed resultant amnesia, however, means this might not be correct. We examined two hypotheses for how SAH patients develop PTSD despite frequent LOC. Firstly, has the frequency of amnesia for ictal events subsequent to LOC been overestimated? Secondly, is it the stress of post-ictal events, rather than ictal events, which causes PTSD? METHOD: Sixty SAH patients, 18 months post-ictus, were assessed for PTSD, LOC at ictus, memory for ictal events, as well as which aspects of their SAH, ictal and post-ictal, were psychologically stressful. Patients also underwent neuropsychological examination. FINDINGS: Of patients, 36.7% had PTSD. Memory overall for ictal events was more common than expected: 50% reported LOC, and only 18% reported no memory. However, memory was not associated with PTSD development. Rather, the key predictor of PTSD was the stress of post-ictal events. The stress of ictal events, cognitive impairment and clinical characteristics were unrelated to PTSD development. Post-ictal events included realizing that their life could have/had changed, that they may have been left with long-term problems, that they could have died and that they had little memory for some SAH events and regaining consciousness. CONCLUSIONS: The traumatic quality of an SAH lies in post-ictal events, rather than ictal events. These events are related to the patients' adjustment to the experience of having had an SAH. Reducing the traumatic severity of these events could potentially reduce the likelihood of PTSD in SAH patients and so improve their outcome.

Neuropsychologic impact of treatment modalities in subarachnoid hemorrhage: clipping is no different from coiling.

OBJECTIVE: This study assesses the impairment in activities of everyday life using a novel test battery following subarachnoid hemorrhage (SAH) and its treatment. METHODS: A one-off neuropsychologic assessment was conducted for all patients who agreed to participate in the study. The date of the interview was at least 12 months after the ictus. The aspects tested included attention, memory, mood, and executive functions. Thirty normal subjects were also assessed using the same battery of tests to act as controls. The data was analyzed using JMP, version 8.0.2. The project was approved by the local research ethics committee and was performed under the tenets of the Helsinki declaration. RESULTS: Analysis from 77 patients and 30 controls is presented. Patients in the SAH group had significant deficits of sustained attention and attentional switching and executive functions when compared to normal controls (P < 0.05, χ(2)). Within the SAH patient group, the deficits were independent of the subgroup to which the patients belonged (coiled, clipped, and perimesencephalic hemorrhage, P > 0.05, χ(2)). The perimesencephalic hemorrhage group had fewer deficits as compared to the coiled and clipped groups, but because there were very few patients in this group, statistical significance was not achieved for these results. CONCLUSION: Our results reflect a change in UK practice in treating aneurysms, the majority being treated with endovascular coiling. After more than 12 months postictus, attention and executive functions were found to be significantly impaired. Significant deficits remain in various cognitive domains following an SAH, but these appear to be independent of the treatment modality according to our data.

Posttraumatic stress disorder explains reduced quality of life in subarachnoid hemorrhage patients in both the short and long term.

OBJECTIVE: A subarachnoid hemorrhage reduces patients' quality of life (QoL) in both the short and long term. Neurological problems alone cannot explain this reduction. We examined whether posttraumatic stress disorder (PTSD) and fatigue provide an explanation. METHODS: We prospectively studied a representative sample of 105 subarachnoid hemorrhage patients. Patients were examined at approximately 3 and 13 months postictus. Examinations included assessments of PTSD, fatigue, sleep, cognitive and physical outcomes, and QoL. Patients' coping skills were also assessed. Regression analyses identified predictors for QoL and PTSD. RESULTS: Thirty-seven percent met the diagnostic criteria for PTSD at both assessment points. This is a fourfold increase compared with the rate of PTSD in the general population. Fatigue in patients was also consistently elevated, higher, in fact, than the notoriously high fatigue level reported for cancer patients undergoing chemotherapy. PTSD was the best predictor for mental QoL, the domain most persistently impaired. It also helped predict physical QoL. Moreover, PTSD was linked to increased sleep problems and may, therefore, have led to fatigue in both the acute and later stages of recovery. To establish the cause of PTSD, a logistic regression was performed. This showed that maladaptive coping was the best predictor of PTSD. CONCLUSION: PTSD explains why some subarachnoid hemorrhage patients, despite relatively good clinical outcomes, continue to experience a reduced QoL. Given that maladaptive coping skills seem the main cause of PTSD, teaching patients better coping skills early on might prevent PTSD and QoL reduction.