Subproject 1 (SP 1) is being conducted at the University of Rostock and the German Center for Neurogenerative Diseases within the Helmholtz Association under the supervision of Prof. Dr.-Ing. Thomas Kirste and Prof. Dr. Stefan Teipel.

Objectives
The aim of SP 1 is to further explore the potential use of intelligent sensing technologies for improving patient-centered care, increasing the efficiency of care-giving processes and empowering patients and caregivers. Thus far, wide-ranging ethical and legal challenges have arisen, particularly with regard to the need of access to extensive annotated data, which form the basis for training and calibration of these systems. Affected persons must therefore be involved in the research process from an early stage on, in order to develop ethical acceptable and sustainable solutions for data collection. Furthermore, intelligent sensing systems require an ethically reflected vocabulary to characterize everyday behavior. This vocabulary provides the ground truth code book and defines the dimensions of mechanical behavior interpretation. It thus represents an assessment of rationality and affects of individual behavior with respect to the healthcare process and its inherent values.
This connection between health care values and ontology design needs to be reflected in the system development process, which is why we propose the value sensitive and affect-aware design. In SP 1 we will develop organizational and technical methods to achieve an appropriate tradeoff between ethical concerns, empowerment and research needs. With respect to the life cycle of intelligent sensing systems, SP 1 will focus on the critical phase of system development studies.

Methods
A systematic approach to address the objectives has to progress along three lines:
(1) Ensuring participants‘ and stakeholders‘ acceptance of system development studies,
(2) the investigation of surrogate technologies for obtaining training data,
(3) adequate consideration of the affective valence of behavior interpretation vocabularies.

TP 1 will utilize the SAMi-project as a sample specimen and considers three research questions, formulated as testable hypotheses:
(1) Using methods of value sensitive design (VSD) will lead to higher rates of acceptance of technology development research and a lower number of instances of potential value conflicts between stakeholders.
(2) Using surrogate technologies for obtaining ground truth offsets the loss of information incurred by these technologies.
(3) Providing stakeholders participating in ontology construction with background on the principles and limits of computational behavior analysis will (3a) increase technology acceptance, and (3b) reduce the expected semantic differential in system operation as measurable by affect control theory.

Research methodology follows the VSD framework.

Subproject 2 (SP 2) is being conducted at the Division of Assistance Systems and Medical Device Technology at the Carl von Ossietzky University of Oldenburg under the supervision of Prof. Dr.-Ing. Andreas Hein.

Objectives
The aim of SP 2 is to investigate whether different assistive systems developed with a focus on patients without cognitive limitations can also be used in the care of people with dementia (PWD) or which barriers exist.

The concrete cases will comprise monitoring systems and robotic assistance in home care settings. The working group Hein has extensive experience with the development of monitoring systems in the home of older people as well as the development of assistive systems for the support of home care (palliative care, intensive care etc.). Both have the potential to empower PWD and caregivers but can also interfere with private care relations and professional self-understandings.

Methods
n particular, the following sub-questions will be addressed by SP 2:
(1) What technical approaches to indoor and outdoor localization can be used? How can we find a compromise between a sufficient technical accuracy for different assistance functions for the caregiver on the one hand and the protection of privacy on the other?
(2) How can functional parameters of the patient be derived from the technical observations and typical behavior patterns be learned? How are normal behavior and deviations from normal behavior interpreted?
(3) How can robotic systems be integrated into the care of PWD? What forms of interaction are appropriate? What target parameters (also including the results of the affective evaluation of situations from SP 1) can / may be automatically controlled by robotic assistance systems? How can robotic systems empower both PWD and caregivers?

A scenario-based approach is used to investigate these questions. Outpatient care scenarios relevant to everyday life in question 1 have already been collected within the framework of the QuoVadis project (supervised by Prof. Dr. Hein); these will be supplemented by an analysis of qualitative interviews with experts (n≥5) and 5 relatives (n≥5) with regard to questions 2 and 3. The interviews will be implemented in close collaboration with SP 3 and SP 4. At least one scenario per question will then be implemented in the laboratories at the University of Oldenburg (RoboticCareLab) and at OFFIS (IdeAAL Lab).

The following three scenarios taken from already existing assistive systems will be transferred to the application for people with dementia:
(1) Security scenarios from the QuoVadis project (sensor based monitoring system),
(2) Support scenarios from projects such as GAL (sensor based monitoring system for complex activity chains)
(3) Robotic support systems from BMBF-projects iTAGAP and PIZ (support for carers and patients in home care).

Subproject 3 (SP 3) is being conducted at the Department of Health Services Research at the Carl von Ossietzky University of Oldenburg under the supervision of Prof. Dr. Mark Schweda.

Objectives
The aim of SP 3 is to explore affected peoples’ views regarding the CIMADeC systems in SP 1 and SP 2. It focuses on the acceptance and acceptability of these technologies with particular respect to notions of and requirements for privacy in care.

CIMADeC poses serious challenges to common notions of privacy. Co-intelligent sensor technologies and robotic assistance systems can help protect and enhance privacy in care. However, they can also interfere with the privacy of affected people’s self-understandings and self-interpretations as well as with the privacy of everyday life and care relations in both domestic and institutional settings. This can have a profound impact on the technologies’ acceptance among those affected and calls for a deeper and more comprehensive understanding of the value of privacy in regard to a good life in care relations. Therefore, the respective views and attitudes of clients/patients and relatives need closer examination.

Methods
In order to include affected people’s views on CIMADeC, the ethical analysis is combined with methods of qualitative social research. We first conduct a systematic analysis of the academic, international discourse on privacy in the context of dementia care. Against this background, qualitative, semi-structured interviews (n≈30) are conducted in order to explore notions of and needs for privacy and the underlying ideas and attitudes. Both PWD themselves as well as caring relatives in domestic and institutional settings will be interviewed. On this basis, the value of privacy in the context of technically assisted care for PWD will be empirically investigated and conceptualized from an ethical point of view. Related topics such as role of intimacy, shame and trust will also be included in our analysis.

Subproject 4 (SP 4) is being conducted at the Department of Medical Ethics and History of Medicine at the University Medical Center Göttingen under the supervision of Prof. Dr. Silke Schicktanz.

Objectives
The aim of this subproject is to explore professionals’ perspectives and attitudes towards the CIMADeC systems described by SP1 and SP2 and ethically reflect on the implications and conditions on empowerment.

In both institutional and domestic care settings, the acceptance of the described socio-technical systems by all stakeholders is of utmost importance. CIMADeC in institutional care settings such as care homes requires social acceptance of both professionals and residents. For professionals (doctors, nurses, social workers, cleaning personal etc.), such systems might imply assistance for their work. They can, for example, enable better assessment of whereabouts or moods of residents as well as provide support for physically demanding tasks. However, they can also pose a threat for (sometimes already precarious) working conditions. Therefore, it is relevant to understand how professional ethos and self-understanding are impacted by such socio-technical systems and how changes in the everyday-life of the working environment are perceived and morally assessed.

Also in domestic care, social acceptance of both PWD and family members as well as outpatient caregivers is important. CIMADeC can help reduce burdens of caring relatives and professional caregivers for everyday tasks, thus allowing more space for themselves and their interpersonal relationships with those affected. At the same time, there is a risk that CIMADeC may undermine the independence the stakeholders involved and interferences with their right to autonomy/self-determination might be overlooked.
The focus of SP 4 lies on the positive and negative potentials of empowerment, both as a process and a result of social care relations in the context of technically assisted care.

Methods
As there exists insufficient knowledge about the moral and social issues, explorative qualitative interviews with professionals will be conducted:

(1) in institutional care homes that have practical experiences with such technological devices (n≈10) and
(2) in institutions that are naïve to such systems (n≈10).

Those experts will be recruited from different hierarchy levels, to include nurses, social workers and directors of care homes.

Additionally, professionals in ambulant care (n≈5), who can be confronted with CIMADeC in informal care settings (see SP 3), and developers (informatics, engineers) of such systems (n≈5) will be interviewed to complete the perspectives on the life cycle of co-intelligent assistive systems.

In order to make a theoretical contribution to empowerment within this specific technological context, SP 4 will also focus on the complex ethical concept of empowerment, which plays a central role in dementia care. Therefore, we will comprehensively examine different levels of interaction in the following five dimensions:
(1) privacy,
(2) security,
(3) participation in decision-making regarding technology development and use,
(4) well-being and
(5) accountability in individual cases.

Leader:

• Prof. Dr. Thomas Kirste
• Prof. Dr. Stefan Teipel

Employees:

• M. Salman Shaukat, M.Sc.
• Moh’d Abuazizeh, Dipl.‐Ing. FH (MMIS)
• Stefanie Köhler (DZNE)

Leader:

• Prof. Dr. Mark Schweda

Employee:

• Eike Buhr, M.Ed.

The international symposium, organized within the framework of the EIDEC project by the project team around the principal investigators (PIs) Silke Schicktanz, Mark Schweda, Andreas Hein, Stefan Teipel, Thomas Kirste and project coordinator Julia Perry in cooperation with the Hanse-Wissenschaftskolleg, took place from September 6 to 8, 2022 at the Hanse-Wissenschaftskolleg (HWK) in Delmenhorst. The conference focused on the future of intelligent assistance systems in dementia care and hosted well-renowned scientists to highlight innovative, but at the same time challenging research questions on assistive technologies in dementia care.  For this purpose, current research projects were shared and discussed in an interdisciplinary context over three days, and consideration was given to how project results can also be transferred to actors outside academia. In addition, the conference gave researchers insights into the results of our research project EIDEC.

We recorded the contributions and discussions audio-visually to make them available for you in the form of three videos. We would like to thank Alicia Teschner in particular for creating the videos.

Programm

Day 1: Tuesday, September 06, 2022

• Welcome and Introduction.
  Prof. Silke Schicktanz and Prof. Mark Schweda
• Presentation: A Novel Cognitive Assessment Scenario in Dementia Using Social Assistive Robots.
  Associate Prof. Filippo Cavallo, University of Florence, Florence, Italy
• Viewpoints: Value-Sensitive Design in Practice: Insights and Challenges.
  Prof. Thomas Kirste, Prof. Andreas Hein and Prof. Stefan Teipel
  01:21:15-02:12:50
• Presentation: Anatomy is Not Destiny: Creating Eyeglasses for the Mind.
  Prof. Gerhard Fischer, University of Colorado, Boulder, USA
  Here are the slides to download as PDF
• Keynote Lecture: Tackling Loneliness in Diverse Communities: Value Sensitive Design of Social Robotics for LGBTIQ Elderly.
  Prof. Oliver Burmeister, Charles Sturt University, Orange, Australia
  Here are the slides to download as PDF

Day 2: Wednesday, September 07, 2022

• Presentation via Zoom: Artificial Systems with Moral Capacities? Theoretical Foundations and a Roadmap for a Geriatric Care System.
  Prof. Catrin Misselhorn, University of Göttingen, Göttingen, Germany
• Presentation: The Value and Role of Smart Technologies in Caring for Older Persons with Dementia.
  Dr. Tenzin Wangmo, Universität Basel, Basel, Switzerland
• Viewpoints: Ethical Challenges of Assistive Technologies: An Empirical Assessment of Affected Persons’ Attitudes.
  Prof. Silke Schicktanz and Prof. Mark Schweda
  01:56:26-02:52:48
• Presentation via Zoom: Confronting Power in Our Conversations about Ethics in Dementia Care Technologies.
  Associate Prof. Clara Berridge, University of Washington, Seattle, USA

Day 3: Thursday, September 08, 2022

• Presentation: „The Technological Way of Being” and Human Flourishing in Health Care: Antithesis or Synthesis?
  Prof. Fabrice Jotterand, Medical College of Wisconsin, Milwaukee, USA
• Keynote Lecture via Zoom: In Dementia Care, Have We ‘Grown Mechanical in Head and in Heart’? And If So, So What?
  Prof. Julian C. Hughes, Bristol Medical School (PHS), Bristol, UK
• Final Discussion and Future Directions: Points to Consider

Scientific Posters

• Eike Buhr & Mark Schweda: The value of privacy in the context of technical assistance for people with dementia: an empirically informed ethical analysis.
  Download poster as PDF here
• Yi Jiao (Angelina) Tian, Nadine Andrea Felber, Felix Pageau, Delphine Roulet Schwab & Tenzin Wangmo: A systematic review of the opportunities and barriers of smart home health technologies in the care of older persons.
  Download poster as PDF here
• Johannes Welsch: Empowerment and technology. An ethical-empirical exploration of technology-assisted dementia care.
  Download poster as PDF here
• M. Salman Shaukat, Johann-Christian Põder, Sebastian Bader & Thomas Kirste: Towards measuring “ethicality” of an intelligent assistive system.
  Download poster as PDF here
• Frederik Pohlmann, Rebecca Diekmann, Andrea Klausen, ML Reuss, Mark Schweda & Andreas Hein: Do scenario-based online interviews promote a change in attitudes towards assistance systems among relatives of patients with dementia?
  Download poster as PDF here
• Hanan AboJabel, Johannes Welsch & Silke Schicktanz: Cross-cultural perspectives on intelligent assistive technology in dementia care: Comparing Israeli and German experts’ attitudes.
  Download poster as PDF here

The introduction of new technologies, such as digital assistive technologies for people with dementia, is associated with various ethical and social challenges. This three-part video series shows the added value of ethical and social science research in the technology development process and how different actors can be involved in the process.

The video series was produced in spring 2023 and was supported by the German Federal Ministry of Education and Research (BMBF). We would like to thank Prof. Dr.-Ing. Gesine Marquardt & Dr.-Ing. Kathrin Büter from the Faculty of Architecture at the Technical University of Dresden for planning and coordinating the graphic and technical implementation.

• Video 1 focuses on the perspective of the technology developers. The video illustrates the potential of ethical-social science research in the technology development process and the importance of creating ideal-typical user profiles. These enable conflicting goals and values to be presented and can be integrated into the technology development process in a further step.
• Video 2 focuses on the perspective of professional caregivers. The video focuses on the role of nurses in recognizing difficulties in the technical implementation of digital assistance systems in practice. It also shows how nurses can get involved in the process of technology development and further development.
• The video focuses on the perspective of those affected by dementia. The video discusses how individual needs must be considered when using digital assistance technologies. But also how important the experiences of dementia patients with the technologies are for the further development of assistance systems.

Further information on the development and implementation of the video series

Planning and coordination of the overall project:

• Prof. Dr. Silke Schicktanz (Medical Ethics, University Medical Center Göttingen)

Leading scientists of the subprojects:

• Prof. Dr. Andreas Hein (Health Engineering, Carl von Ossietzky University Oldenburg)
• Prof. Dr. Thomas Kirste (Computer Science, University of Rostock)
• Prof. Dr. Mark Schweda (Medical Ethics, Carl von Ossietzky University Oldenburg)
• Prof. Dr. Stefan Teipel (University Medical Center Rostock/ German Center for Neurodegenerative Diseases e.V. (DZNE))

Inputs for ideas and scripts of the present videos came especially from the following participating scientists:

• Eike Buhr, M.Ed. (Carl von Ossietzky University Oldenburg)
• Dr. Rebecca Diekmann (Carl von Ossietzky University Oldenburg)
• Sabrina Krohm, M.A. (University Medical Center Göttingen)
• Julia Perry, M.A. (University Medical Center Göttingen)
• Salman Shaukat, M.Sc. (University of Rostock)
• Johannes Welsch, M.A. (University Medical Center Göttingen)

Planning and coordination of the graphical and technical implementation:

• Prof. Dr.-Ing. Gesine Marquardt (Faculty of Architecture, Dresden University of Technology)
• Dr.-Ing. Kathrin Büter (Faculty of Architecture, Dresden University of Technology)

Graphics, animation and editing:

• Charlott Kurek (Communication Designer Dresden)

Narrator and sound recording:

• Anne Grabowski (episode 1 and 3)
• Mike Langhans (episode 2)

• Köhler, S., Perry, J., Biernetzky, O.A., Kirste, T. & Teipel, S.J. (2024): Ethics, design, and implementation criteria of digital assistive technologies for people with dementia from a multiple stakeholder perspective: a qualitative study. BMC Med Ethics 25(84). DOI: 10.1186/s12910-024-01080-6
• Buhr, E., Welsch, J. & Shaukat, M.S. (2024) Value preference profiles and ethical compliance quantification: a new approach for ethics by design in technology-assisted dementia care. AI & Soc. DOI: 10.1007/s00146-024-01947-7
• AboJabel, H., Welsch, J. & Schicktanz, S. (2024): Cross-cultural perspectives on intelligent assistive technology in dementia care: comparing Israeli and German experts’ attitudes. BMC Med Ethics, 25(15). DOI: 10.1186/s12910-024-01010-6
• Raz, A., Minari, J.,Schicktanz, S., Sharon, T., Werner-Felmayer, G. (2023) Eds.: Data-intensive medicine and healthcare: ethical and social implications in the era of artificial intelligence and automated decision-making. Frontiers Genetics, 14(1280344). DOI: 10.3389/fgene.2023.1280344
• Schicktanz, S., Welsch, J., Schweda, M., Hein, A., Rieger, J.W., Kirste, T. (2023): AI-Assisted Ethics? Considerations of AI Simulation for the Ethical Assessment and Design of Assistive Technologies. Frontiers in Genetics,14(1039839). DOI: 10.3389/fgene.2023.1039839
• Köhler, S., Görß, D., Kowe, A., Teipel, S. (2022): Matching values to technology: a value sensitive design approach to identify values and use cases of an assistive system for people with dementia in institutional care. Ethics and Information Technology, 24(3), 27. DOI: 10.1007/s10676-022-09656-9
• Buhr, E., Schweda, M. (2022): Technische Assistenzsysteme für Menschen mit Demenz: Zur ethischen Bedeutung von Beziehungen. In: Friedrich, Orsolya et al. (Hg.): Mensch-Maschine-Interaktion – Konzeptionelle, soziale und ethische Implikationen neuer Mensch-Technik-Verhältnisse. Paderborn: mentis, 284-301. DOI: 10.30965/9783969752609_022
• Buhr, E.,  Schweda, M. (2022): Der Wert des Privaten für Menschen mit Demenz. Ethik Med, 266(5), S. 7. DOI: 10.1007/s00481-022-00723-9
• Buhr, E., Welsch, J.(2022): Privacy-sensitive Empowerment. Towards an Integrated Concept for Technology Assisted Care for People with Dementia. In: Rubeis, G. et al. (Hg.): Digitalisierung der Pflege. Interdisziplinäre Perspektiven auf digitale Transformation in der pflegerischen Praxis. Göttingen: Vandenhoeck & Ruprecht, 185-197, ISBN E-Lib: 9783737014793. DOI: 10.14220/9783737014793.185
• Working paper "Stakeholder-Konferenz zu Digitalen Assistenzsystemen für Menschen mit Demenz, pflegende Angehörige und Pflegekräfte im Rahmen des EIDEC-Projektes am 31.03.2022.". Download working paper.
• Welsch, J.(2022): Empowerment and Technology. An ethical-empirical exploration of technology-assisted dementia care [Poster]
• Löbe, C., Abo Jabel, H.(2022): Empowering people with dementia via using intelligent assistive technology: A scoping review. Archives of Gerontology and Geriatrics, 101(104699). DOI: 10.1016/j.archger.2022.104699
• Schicktanz, S., Schweda, M. (2021): Aging 4.0? Rethinking the ethical framing of technology‐assisted eldercare. History and Philosophy of the Life Sciences, 43(93). DOI: 10.1007/s40656-021-00447-x  
• Schweda, M., Schicktanz, S.(2021): Ethische Aspekte co-intelligenter Assistenztechnologien in der Versorgung von Menschen mit Demenz. Psychiatrische Praxis, 48(01). 37–41. DOI: 10.1055/a-1369-3178
• Shaukat, M. S., Põder, J.-C., Bader, S., & Kirste, T. (2021). Towards Measuring Ethicality of an Intelligent Assistive System. Proc. 1st AITHICS workshop (Artificial Intelligence and Ethics) held at 44th German Conference on Artificial Intelligence (KI-2021). DOI: 10.48550/ARXIV.2303.03929
• Shaukat, M. S., Hiller, B. C., Bader, S., & Kirste, T. (2021). SimDem: A Multi-agent Simulation Environment to Model Persons with Dementia and their Assistance. 4th International Workshop on AI for Aging, Rehabilitation and Independent Assisted Living held at IJCAI 2021. http://arxiv.org/abs/2107.05346
• Krohm, S.(2021): ‚Female‘ Care and ‚Male‘ Technology? Pflege und technische Assistenzsysteme aus Sicht beruflich Pflegender - Eine explorative qualitative Interviewstudie. [Poster]
• Schweda, M., Kirste, T., Hein, A., Teipel, S., Schicktanz, S. (2019): The emergence of co-intelligent monitoring and assistive technologies in dementia care - an outline of technological trends and ethical aspects. Bioethica Forum,12 (1/2). 29–37. DOI: 10.24894/BF.2019.12008