Publications

Abstract: Dementia impairs the ability of people with dementia to be autonomous and independent. They need support from third parties, who should ideally respect their autonomy and independence as much as possible. Supporting people with dementia can be very burdensome for caregivers and numbers of patients increase while numbers of potential caregivers decline. Digital assistive technologies (DATs) that directly support patients or their caregivers may help bridging the increasing gap between need of support and available resources. DATs have the potential to preserve the autonomy and independence of people with dementia and promote their abilities, if they are properly designed in close interaction with future users. In our study, we focused on ethical concerns, technological requirements, and implementation criteria for DAT in general and specifically to support outdoor mobility of people with dementia. We applied a qualitative approach and conducted a World Café (2 tables, n = 7) and an online focus group (n = 6) with people with dementia, relatives, healthcare professionals, scientists, ethics experts, and experts for digitally-assisted medical care. We descriptively analyzed the data using a content analysis approach. The participants reported technological (e.g., lack of Wi-Fi), financial (e.g., expensive devices or lack of budget for DATs), political (e.g., legal hurdles such as the European Medical Device Law or data protection regulations) as well as user-related hurdles (e.g., lack of digital competence) for the implementation of DAT in dementia care. Among the issues discussed were the importance of autonomy, independence, safety, privacy, and questions of decision making capacity in DAT’s use. Participants identified opportunities and benefits in self-learning, situation-aware DATs and wished for dementia-friendly communities. They emphasized the value of personal interaction that should not be replaced, but rather supported by DAT. The results revealed multiple hurdles and ethical concerns for DAT use and provided recommendations for designing and implementing DATs. Further investigations are needed on the impact of DAT on personal interactions in caregiving and the role of DAT in dementia-friendly communities.

Monitoring and assistive technologies (MATs) are being used more frequently in healthcare. A central ethical concern is the compatibility of these systems with the moral preferences of their users—an issue especially relevant to participatory approaches within the ethics-by-design debate. However, users’ incapacity to communicate preferences or to participate in design processes, e.g., due to dementia, presents a hurdle for participatory ethics-by-design approaches. In this paper, we explore the question of how the value preferences of users in the field of dementia care can be integrated into AI-based MATs. First, we briefly introduce different ethics-by-design approaches and explain the challenges they face in dementia care. Next, we introduce a novel approach for addressing these challenges. Through a qualitative content analysis of interviews with persons with dementia and their family caregivers (n = 27), we identified multiple ideal–typical value preference profiles. We then applied these profiles in a computer simulation, by which we also introduce the concept of ethical compliance quantification to scale the moral preferences of the interviewees for the simulation. Finally, we discuss study results, the advantages of using computer simulations, and general study limitations before drawing conclusions for further research. The study contributes to the ongoing debate on participatory ethics-by-design by defining on the basis of empirical data ideal–typical value preference frameworks that can be used to guide MAT actions and their outcomes. Going forward, MAT end-users with dementia and other communication-impaired persons could be enabled to choose a value profile that best fits their moral preferences.

Abstract: Despite the great benefits of intelligent assistive technology (IAT) for dementia care – for example, the enhanced safety and increased independence of people with dementia and their caregivers – its practical adoption is still limited. The social and ethical issues pertaining to IAT in dementia care, shaped by factors such as culture, may explain these limitations. However, most studies have focused on understanding these issues within one cultural setting only. Therefore, the aim of this study was to explore and compare the attitudes of Israeli and German dementia experts toward IAT in dementia care, to contribute to a more cultural-comparative perspective. Semi-structured interviews were conducted with 35 experts (15 Israelis and 20 Germans) in key roles in health and community services for people with dementia as well as in the fields of dementia and IAT (e.g., computer science, electrical/biomedical engineering, ethics, nursing, and gerontology). Thematic content analysis was used to analyze the data. Israeli and German experts identified the same social accelerators in the development and implementation of IAT in dementia care (i.e., changes in family structure and social digitization) and benefits of adopting IAT (e.g., enhancing the safety of people with dementia and increasing their independence). However, there were differences in inhibitor/risk assessments between the two groups. Namely, economic considerations and the cognitive capacity of people with dementia were identified by both groups as inhibitors, while Israeli experts additionally reported stigma and ageism. Whereas both groups agreed that IAT might reduce human connection, and that the technology is not yet reliable enough, German experts highlighted concerns regarding privacy; in contrast, Israeli experts prioritized safety over privacy. Our research findings allow for the identification of relevant similarities but also important differences between German and Israeli experts’ perspectives. As such, an important basis has been provided for a more in-depth discussion regarding where, why, and how culturally-sensitive technology development is needed.

Abstract: Innovation und Praxis in der Medizin und Gesundheitsfürsorge beruhen zunehmend auf der Integration und Interpretation einer Vielzahl medizinischer (z. B. Genomik- oder andere Omics-Daten, Bildgebungsdaten) und anderer persönlicher Daten. Dieser Trend zur Datafizierung bietet ein erhebliches Potenzial für das Verständnis von Gesundheit und Krankheit, die Entwicklung personalisierter Behandlungen, die Verbesserung der Krankheitsprävention und eine effizientere Gesundheitsversorgung. In diesem Zusammenhang spielt die künstliche Intelligenz (KI) mit neuen Methoden wie maschinellem Lernen (ML) und Deep Learning (DL) eine immer wichtigere Rolle, z. B. bei der Entwicklung prädiktiver Risikoscores, der Phänotypisierung von Krebserkrankungen, der Diagnose seltener Krankheiten oder sogar der Entwicklung molekularer Arzneimittel. Zusätzlich zu diesen neuen Techniken werden in der Medizin und im Gesundheitswesen zunehmend algorithmisch gesteuerte, automatisierte Entscheidungsfindungs- (ADM) oder Entscheidungsunterstützungssysteme eingesetzt, z. B. Verfahren, die Entscheidungen an andere Stellen delegieren, die dann eine Aktion auf der Grundlage automatisch ausgeführter Entscheidungsmodelle durchführen. Die Wissenschaft zu ethischen, rechtlichen und sozialen Fragen der KI in der datenintensiven Medizin und im Gesundheitswesen hat zahlreiche Streitpunkte aufgezeigt, darunter Transparenz und Erklärbarkeit, Privatsphäre und Datenschutz, Vertrauen, Voreingenommenheit und die Frage, wie KI die Beziehung zwischen Patient und Arzt beeinflussen und interdisziplinäre Expertenteams bei ihren Entscheidungen unterstützen könnte. Mit dem Ziel, diese Perspektive zu erweitern, konzentriert sich dieses Forschungsthema auf KI-Anwendungen mit oder ohne ADM in verschiedenen Bereichen der datenintensiven innovativen Medizin, wie Genomik, Onkologie, Intensivpflege, Altenpflege, Infektionsmanagement, Neurowissenschaften, Psychiatrie, Zuweisung von Pflege und Reproduktionsmedizin. Wir suchen Beiträge, die untersuchen, ob und wie ethische und gesellschaftliche Überlegungen Teil von KI und ADM sein können/sollen, z. B. durch die Berücksichtigung von Diversitätsfragen, der Bedeutung von Datafizierung und Automatisierung, der Beteiligung von Öffentlichkeit und Patienten, der Entwicklung deliberativer oder offener wissenschaftlicher Ansätze (wie offene Codes usw.) und durch die Gewährleistung von Interoperabilität zwischen vielen Entwicklern und Nutzern, wobei gleichzeitig Missbrauch, Hacking oder Manipulation vermieden werden sollen. Ein weiteres Ziel ist es, die ethischen Herausforderungen zu untersuchen, die sich aus der Ausweitung der ADM von der Diagnostik auf die Entscheidungsfindung bei der Behandlung ergeben, und zu untersuchen, wie die Kluft zwischen Diagnose und Behandlung überbrückt werden kann.

Abstract: In den aktuellen ethischen Debatten über den Einsatz von künstlicher Intelligenz (KI) im Gesundheitswesen wird KI auf dreierlei Weise als Technologieprodukt behandelt. Erstens werden die Risiken und der potenzielle Nutzen der derzeit entwickelten KI-gestützten Produkte anhand von ethischen Checklisten bewertet; zweitens werden ex ante Listen mit ethischen Werten vorgeschlagen, die als relevant für die Gestaltung und Entwicklung von assistierender Technologie angesehen werden, und drittens wird die KI-Technologie dazu angehalten, im Rahmen des Automatisierungsprozesses moralische Überlegungen anzustellen. Die Dominanz dieser drei Perspektiven im Diskurs wird durch eine kurze Zusammenfassung der Literatur aufgezeigt. Anschließend schlagen wir eine vierte Herangehensweise an KI vor, nämlich als methodologisches Werkzeug zur Unterstützung ethischer Reflexion. Wir stellen ein Konzept für eine KI-Simulation vor, das auf drei separaten Elementen beruht: 1) stochastische menschliche Verhaltensmodelle auf der Grundlage von Verhaltensdaten zur Simulation realistischer Umgebungen, 2) qualitative empirische Daten zu Wertaussagen in Bezug auf die interne Politik und 3) Visualisierungskomponenten, die helfen, die Auswirkungen von Änderungen dieser Variablen zu verstehen.  Das Potenzial dieses Ansatzes besteht darin, ein interdisziplinäres Feld über zu erwartende ethische Herausforderungen oder ethische Kompromisse in konkreten Situationen zu informieren und damit eine Neubewertung von Design- und Implementierungsplänen anzustoßen. Dies kann insbesondere für Anwendungen nützlich sein, die sich mit äußerst komplexen Werten und Verhaltensweisen oder mit eingeschränkten Kommunikationsressourcen der Betroffenen befassen (z. B. bei der Pflege von Menschen mit Demenz oder bei der Pflege von Menschen mit kognitiven Einschränkungen). Die Simulation ersetzt nicht die ethische Reflexion, ermöglicht aber eine detaillierte, kontextsensitive Analyse während des Designprozesses und vor der Implementierung. Abschließend diskutieren wir die inhärent quantitativen Analysemethoden stochastischer Simulationen sowie das Potenzial für ethische Diskussionen und wie Simulationen mit KI traditionelle Formen von Gedankenexperimenten und zukunftsorientierter Technologiebewertung verbessern können.

Abstract: The number of people with dementia is increasing worldwide. At the same time, family and professional caregivers’ resources are limited. A promising approach to relieve these carers’ burden and assist people with dementia is assistive technology. In order to be useful and accepted, such technologies need to respect the values and needs of their intended users. We applied the value sensitive design approach to identify values and needs of patients with dementia and family and professional caregivers in respect to assistive technologies to assist people with dementia in institutionalized care. Based on semi-structured interviews of residents/patients with cognitive impairment, relatives, and healthcare professionals (10 each), we identified 44 values summarized by 18 core values. From these values, we created a values’ network to demonstrate the interplay between the values. The core of this network was caring and empathy as most strongly interacting value. Furthermore, we found 36 needs for assistance belonging to the four action fields of activity, care, management/administration, and nursing. Based on these values and needs for assistance, we created possible use cases for assistive technologies in each of the identified four action fields. All these use cases already are technologically feasible today but are not currently being used in healthcare facilities. This underlines the need for development of value-based technologies to ensure not only technological feasibility but also acceptance and implementation of assistive technologies. Our results help balance conflicting values and provide concrete suggestions for how engineers and designers can incorporate values into assistive technologies.

Abstract: In view of demographic change, the shift in traditional family care structures and the shortage of skilled workers in professional care, there is an increasing focus on technical solutions to enable people with dementia to live independently for as long as possible and to ensure the demanding and time-consuming support and care required in the advanced stages of dementia. Dealing with people with dementia involves specific requirements due to their progressive cognitive impairment and their correspondingly increased vulnerability. The importance of familiar relationships for the self-determination and well-being of those affected is always emphasized. For example, professional care for people with dementia should take place in relationships that enable all those involved to experience security, fulfillment and a sense of purpose. The use of technical assistance systems can intervene deeply in this fundamental network of care relationships and influence and change it in different ways. On the one hand, the digitalization of care is often associated with the expectation that assistive technologies could free up time and human resources for emotional attention and social interaction, thereby strengthening caring relationships. On the other hand, there are also repeated fears that human care and support could be quickly replaced by technical assistance in the course of automation.
Against this background, this article examines the question of what ethical significance the use of technical assistance systems could have with regard to the care relationships that are crucial for people with dementia. To this end, we first provide an overview of the range of assistive technologies that are currently being developed and used to support the independent living and care of people with dementia. We then look at the importance of relationships for the life and care of people with dementia and examine the impact that the use of technical assistance systems can have in this respect.In doing so, we refer to Mike Nolan’s „Senses Framework“, which is recognized in dementia care. On this basis, we conclude by outlining requirements for the use of technology in the care of people with dementia that can allow, ensure or even promote an appreciative and appreciative relationship. In doing so, we argue that trust, relational privacy and reciprocal care are particularly important for establishing, maintaining and cultivating meaningful relationships in this area.

Abstract: The concept of privacy has been astonishingly absent in the discussion about dementia care. In general, questions of privacy receive a lot of attention in nursing ethics; however, when it comes to dementia care, hardly any systematic ethical debate on the topic can be found. It almost seems as though people with dementia had lost any comprehensible interest in privacy and no longer had any private sphere that needed to be considered or protected. However, this not only contradicts widespread moral intuitions but also ignores the views and needs of those affected. We first outline the origins and dimensions of the concept of privacy and point out problems and limitations in the context of dementia. Especially the prevalent liberal conceptions’ dependence on the idea of autonomy poses significant challenges to an adequate conceptualization of the moral significance of privacy for people with dementia. Therefore, we subsequently explore alternative ways of conceptualizing the “value of privacy” in the context of dementia care. Autonomy-based concepts of privacy may still be valid in the early stages of dementia. However, in the further course of the syndrome, the relevance of other normative aspects comes to the fore, especially respect for remaining personal preferences as well as objective criteria of dignity and well-being. Thus, we outline in a differentiated manner how and to what extent privacy can be of normative importance beyond the purview of autonomy and should consequently be taken into consideration in dementia care.

Abstract: Demographic ageing and the increasing prevalence of cognitive disorders are exacerbating the existing care crisis. At the same time, steady progress is being made in the field of digitalization and the development of monitoring systems, mobility-assisting robotics and even social robots to be used in the care of people with dementia (PWD). These devices are socio-technical systems that we refer to as co-intelligent assistance systems for dementia care (CIMADeC), as they are based on human-machine interactions. The use of these technologies in institutional and informal care settings is often presented as a solution to the current challenges of dementia care, as they have the potential to support independent living, detect or predict impending problems and crises, relieve caregivers and increase the overall quality and cost-effectiveness of dementia care. However, initial empirical and ethical assessments point to a fundamental ambivalence. For caregivers, such systems can provide support in their work, but can also threaten their (sometimes already precarious) working conditions. CIMADeC could empower PWD, e.g. through greater security and independence, but could also potentially jeopardize their privacy. CIMADeC therefore offers promising starting points for investigating empowerment and privacy as normative guiding concepts in dementia care. Based on the assumption that a lack of clarity at the conceptual level complicates the concrete care situation as a not least communicative process between the participants, we will specify the concepts of empowerment and privacy and propose privacy-sensitive empowerment (PSE) as an integrated ethical concept for the technology-supported care of people with disabilities. We propose the integrative concept of PSE to reflect normative conflicts and provide ethical guidance for their resolution. To introduce PSE as an integrative ethical concept, in a first step we will unfold empowerment and privacy as relevant ethical aspects in the context of CIMADeC for people with dementia. In a next step, we will present the possible normative conflicts between them. Finally, we present PSE, an empirically-informed approach that combines the concepts of empowerment and privacy. We outline an empirically-informed ethical approach to explore the full range of practical and context-specific aspects of empowerment and privacy in CIMADeC. First, our approach provides a framework for ethical reflection on conflicts between autonomy and privacy. Secondly, it offers helpful ethical guidance for the practice of care when the demands for more self-determination and lived privacy come into conflict.

Abstract: The interdisciplinary consortium of the EIDEC project is investigating social and ethical aspects of the use of intelligent monitoring and assistance systems (MAS) in home and inpatient dementia care. The aim of the project is to identify values and acceptance criteria in the use of MAS, to reflect on conflicts and to facilitate the use of MAS in care practice. As part of sub-project (SP) 1 „Value-sensitive and affect-aware design“, a stakeholder conference on the topic of „Digital assistance systems for people with dementia, caregiving relatives and caregivers“ was held in Rostock on March 31, 2022 with local actors in dementia care. The conference was held in a World Café format.

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Abstract: Over the past decade, the idea has been promoted that intelligent assistive technology (IAT) can empower people with dementia. As a new area of inquiry, however, the concept of empowerment and the impact of IAT in this context are still unclear. Therefore, we conducted a scoping review to examine the conceptualizing and measuring of empowerment, as well as to understand the impact of IAT on empowering people with dementia in the existing studies. A scoping review was performed in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, using the following databases: Pubmed, Cochrane Library, Web of Science, and Science Direct. In addition, a manual search was also conducted in Google Scholar to identify further articles.A total of 28 articles examining the empowerment of people with dementia via IAT met the inclusion criteria. Most had a cross-sectional (43%) or interventional/experimental design (39%). A little more than half (54%) were qualitative studies. We observed inconsistencies in the conceptualization and measurement of the concept of empowerment in the included studies; as such, the exact role of IAT in this context remains somewhat unclear. However, most of the studies suggest that IAT can empower people with mild/moderate dementia by enhancing their capacity to live more independently with privacy for a longer period of time. Future research should focus on developing a clear definition of the concept of empowerment, as well as developing a reliable and valid tool for measuring it.

Abstract: Technologische Ansätze werden zunehmend als Lösung für die Unterstützung bei den Aktivitäten des täglichen Lebens sowie bei der medizinischen und pflegerischen Versorgung älterer Menschen diskutiert. Die Entwicklung und Implementierung solcher assistiven Technologien für die Altenpflege wirft vielfältige ethische, rechtliche und soziale Fragen auf.Die Diskussion dieser Fragen wird durch theoretische Perspektiven und Ansätze aus der Medizin- und Pflegeethik beeinflusst, insbesondere durch den prinzipienorientierten Rahmen von Autonomie, Non-Maleficence, Beneficence und Gerechtigkeit.  Der vorliegende Beitrag knüpft an die bisherige Kritik an und nimmt diese Prinzipien als Ausgangspunkt und Bezugsrahmen, um sie kritisch zu hinterfragen. Es soll daher aufgezeigt werden, wie bestehende ethische Rahmenwerke erweitert oder überdacht werden müssen, um die ethischen Fragen zu erfassen, die sich durch die technologischen Entwicklungen in der Altenpflege stellen. In einem ersten Schritt geben wir einen kurzen Überblick über unterstützende Technologien in der Altenpflege nach ihren Zwecken und Funktionen. Im nächsten Schritt erörtern wir, wie die Fragen und Probleme, die durch neue Technologien in der Altenpflege aufgeworfen werden, eine Erweiterung, Neuinterpretation und Überarbeitung des prinzipienorientierten Rahmens erfordern. Wir betonen, dass die Einbeziehung ethischer Perspektiven aus den Ingenieurwissenschaften und der Informatik sowie eine stärkere Berücksichtigung sozio-politischer Dimensionen und grundlegender anthropologischer und praxeologischer Fragen erforderlich sind.

Abstract: Smart assistive technologies are increasingly discussed as a solution for the care of people with dementia. The article considers central ethical challenges of the use of such systems. It focuses on issues of privacy and empowerment.

Abstract: Artificial intelligence (AI) based assistive systems, so called intelligent assistive technology (IAT) are becoming increasingly ubiquitous by each day. IAT helps people in improving their quality of life by providing intelligent assistance based on the provided data. A few examples of such IATs include self-driving cars, robot assistants and smart-health management solutions. However, the presence of such autonomous entities poses ethical challenges concerning the stakeholders involved in using these systems. There is a lack of research when it comes to analysing how such IAT adheres to provided ethical regulations due to ethical, logistic and cost issues associated with such an analysis. In the light of the above-mentioned problem statement and issues, we present a method to measure the ethicality of an assistive system. To perform this task, we utilised our simulation tool that focuses on modelling navigation and assistance of Persons with Dementia (PwD) in indoor environments. By utilising this tool, we analyse how well different assistive strategies adhere to provided ethical regulations such as autonomy, justice and beneficence of the stakeholders.

Abstract: Developing artificial intelligence based assistive systems to aid Persons with Dementia (PwD) requires large amounts of training data. However, data collection poses ethical, legal, economic, and logistic issues. Synthetic data generation tools, in this regard, provide a potential solution. However, we believe that already available such tools do not adequately reflect cognitive deficiencies in behavior simulation. To counter these issues we propose a simulation model (SimDem ) that primarily focuses on cognitive impairments suffered by PwD and can be easily configured and adapted by the users to model and evaluate assistive solutions.

Abstract: The aim of the study was an exploratory investigation of the views of professional carers on care and technical assistance systems for people with dementia with a focus on the relevance of gender and gender stereotypes. To this end, 21 guideline-based expert interviews were conducted with professional caregivers, which were analyzed using a structuring qualitative content analysis. Results: Gender stereotypes and the topic of gender were brought up by the nurses interviewed primarily in connection with interest in and skills in technology, but also in the context of intimate care, external appearance and physical strength. Gender also plays a latent role in connection with the ideals of good care. These are often linked to the emphasis on empathy, communication and the component of emotional work, which are also stereotypically attributed to women in particular. Nurses emphasize social and emotional aspects of nursing care. Communication and interaction with patients and residents and the loneliness of those in need of care, especially in the home, are also addressed. For some carers, this conflicts with the use of certain assistive systems that are unable to provide this socio-emotional level of care. On the other hand, there is the potential gain in autonomy and privacy for those affected. However, carers also see age and generational affiliation as important influencing factors, particularly with regard to the use of technology. Especially in the interaction of older people in need of care with physical robots, excessive demands and fears are predicted. This is particularly related to generational affiliation, which is why the systems could only be successfully established in practice in a few years or decades when the generation of digital natives reaches the age of needing care. The use of technologies such as tracking systems, on the other hand, which do not require complex operation by those affected themselves or do not substitute for nursing care for people, is rated quite positively across the board.

Abstract: This contribution explores ethical aspects of co-intelligent monitoring and assistive technologies in dementia care (CIMADeC). The aim is to provide an outline of central practical problems and ethically relevant questions. A particular focus is on two crucial issues in the development of such systems for the vulnerable group of people with dementia: privacy and empowerment. We first give an overview of the state of the art of technology development in the field of CIMADeC. On this basis, we turn to the ethical debate on assistive technologies in the context of dementia in order to extrapolate ethical aspects and open questions of this emerging form of dementia care. Against the backdrop of a general overview of ethical issues, the analysis takes a closer look at problems of privacy and empowerment. The discussion stresses the relevance of interdisciplinary co-operation between engineering, care and ethics. A crucial question is how ethical concerns of users and other stakeholders can be included in the spirit of participatory technology development.