Due to demographic change and technological innovations, the care of people with de-mentia is undergoing a fundamental transformation. New tracking, sensor and assistance technologies make it possible to monitor and support the behavior of people with demen-tia. These socio-technical systems integrate artificial intelligence, semantics and human interpretations. The increasing use of such technical assistance systems is intended to help overcome the growing challenges in the care of people with dementia. The goals are manifold and include: to enable independent living, to detect problems early for safety issues, to relieve caregiver burden, or to increase the quality and cost-effectiveness of care. At the same time, new challenges arise from the use of such modern technologies. Technologies that increase the independence of people with dementia could deeply in-terfere with their privacy. Systems that focus only on physical safety of people with de-mentia could limit their independence and self-determination. The goal of increasing the sense of security for family and professional caregivers could be pursued at the expense of the autonomy of those affected. These conflicts reflect not least the progressive moral pluralization of modern societies. Thus, not only do value conflicts arise within usage, but moral preferences regarding functionality also vary from user to user. Additionally, when addressing people with dementia, these challenges are even aggravated, as PWD are seen as customers who increasingly lose the ability to participate in design and imple-mentation processes because of the course of their illness. All these pose major chal-lenges, especially for the developers of technical assistive systems, who are often experts from non-medical areas such as informatics, engineering and industry design. Hence, technology assistive care forliving with dementia will require from an ethical point of view various avenues to bring medical ethics, participatory approaches, value-oriented tech-nology design together.
To address these avenues, potentials as well as ethical challenges, our international and interdisciplinary panel sets out to ask what matters ethically in technology-assisted care. Hence, we want to discuss the following issues from different angeles in bioethics:
- What are the chances and challenges of Participatory Design Processes with People with Dementia?
- How to deal in technological design procedures, striving for standards and mass production, with value pluralism and the aim of individualization?
- How can assisted technology promote self-determination and empowerment and not result in another form of external control?
- How should privacy considered as an ethical key term in the context of digitaliza-tion and technological monitoring ? How can privacy be understood in the context of living with dementia?
- How is can empirical research on value and preferences contribute to understand and solve ethical challenges in this field? How can we practical deal with value pluralism?
All in all, this panel will first provide an overview of existing challenges and opportunities in technology-assisted dementia care. Current approaches will be reflected and problem-atized for the specific case of dementia care. It becomes apparent that established con-cepts of conventional care reach their limits here. By combining technology assessment and empirically informed ethics, the panel ultimately contributes to the study of sociologi-cal acceptance and moral evaluation of technical assistance systems in dementia care and identifies possible directions for future research.
Digital citizenship and dementia: Multiple perspectives on ethical challenges associated with technology use in dementia care
Dr. Louise Hopper
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Author:
Dr. Louise Hopper
Background: Older adults have long expressed the desire to remain independent, living at home and integrated with their communities for as long as possible. This is often diffi-cult when faced with a diagnosis of dementia and the search continues for acceptable, efficient, and cost-effective solutions to enable people with dementia to remain well at home for longer. Technology-based approaches can support ageing in place, but they bring with them various ethical challenges that need to be addressed. Methodology: Literature associated with technology assisted dementia care was reviewed and combined with the findings from three recent dementia-related technology projects in Dublin City University to identify key ethical issues associated with the use of technology in dementia care and the current state of pertinent scholarly debate. We present explana-tory examples of ethical issues that can arise when providing care and supporting people with dementia, and examine how these can be addressed, particularly in the fact of value pluralism. Ethical Discussion: We evaluate ethical considerations such as rights, consent, capacity, privacy, surveillance, autonomy and safety from the perspectives of people with demen-tia, their families, communities and caregivers. We consider the potential misuse of tech-nology as surveillance tools, the possible exploitation of the data they capture, and the possibility of adverse affective outcomes for people with dementia and their caregivers emer
Unravelling the barriers and opportunities of smart home health technologies in the care of older persons
Angelina Tian
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Authors:
Nadine Felber
Angelina Tian
Dr. Felix Pageau
Dr. Tenzin Wangmo
Background: Smart home health technology are those assistive technologies that aid in ensuring health, independency, social participation, and well-being of older persons in their living context, be it their home or nursing home. These smart technologies make it possible for formal and informal caregivers to care for an older person more conveniently. Such technologies are making their way into the market for elders and elder care, and are providing support such as monitoring vitals, reminding the person about different events, health assessment and detection of health decline, mental health evaluation, social in-teractions, and adverse events monitoring, such as falls. However, we lack comprehensi-ve knowledge about existing barriers and opportunities associated with the use of these smart technologies in the home setting and for caregiving purposes. Methodology: The research team is carrying out a systematic review of literature to map all barriers and opportunities presented with the use of smart home health technologies in the care of older persons. We seek to compare barriers and opportunities reported by dif-ferent stakeholder groups (older adults vs their formal or informal caregivers) as reasons to use or not use such technologies. Ethical discussion: By understanding whether and how the reasons for using smart ho-me technologies vary between the care-recipient and the care-giver, we will be able to properly study the different ethical values at stake and how they
The value of privacy for people with dementia in technology-assisted dementia care: widening the scope beyond data protection
Eike Buhr
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Authors:
Eike Buhr
Prof. Dr. Mark Schweda
Background: Privacy is often positioned as a norm to be protected against the use of monitoring and assistance systems in the care of people with dementia. Privacy is understood as the right to be left alone or as the ability to manage one's own personal affairs independently. Additionally, the scope of application is often limited to personal information. The value of privacy for people with dementia in the context of assistance technologies has thus not yet been adequately conceptualized. Methodology: We conducted a literature review and reviewed different concepts of privacy and related concepts, developing a broad conceptual matrix. We then conducted a comparative analysis of qualitative interviews with people with dementia and their relatives (n = 20) to explore further dimensions of meaning of privacy. Thus, we developed empirically-informed preference profiles regarding the value of privacy for people with dementia in technology-assisted dementia care. Ethical discussion: We present a wide and multidimensional concept of privacy that is neither explicitly tied to autonomy nor solely focused on the informational dimension of privacy. We also discuss the local and decisional dimensions of privacy. By combining empiricism and ethical analysis, we capture dimensions of the meaning of privacy for people with dementia that have not been made explicit to date. This concept can illuminate the value of privacy for people with dementia in technology-assisted dementia care.
Developing Value Preference Profiles as tool for value-oriented technology design for living with dementia? Practical and methodological considerations
Johannes Welsch
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Authors:
Johannes Welsch
Prof. Dr. Silke Schicktanz
Background: The customizability of technologies in elderly and dementia care has been identified as crucial condition of acceptance. Ideally, technology should be adopted to customers’ values - not vice versa. This corresponds to empowerment approaches that regard self-determination and participation in complex design processes as ethical condition. However, cognitive decline caused by dementia poses a major challenge to the implementation. Alternative forms of value elicitation and participation might be explored. Methodology: We conducted a comparative analysis of qualitative interviews with people with dementia and their relatives and with professional experts involved in technology for dementia care (n=40). Our analysis is focusing on values prioritized in particular technological care scenarios and ethical and social expectations towards technology design and implementation procedures. We identify various value preference profiles - a set of orientations considering values such as autonomy or privacy that differ in their ranking but constitute patterns. Ethical Discussion: We discuss the similarities among affected persons’ and experts’ perspective but also identify differences and gaps. We also propose that empirically identified value preferences can help to shape the process of technological design. We will also discuss limitations and propose a more systematic recording of value preferences for indirect participation in design processes as a mean of empowerment.