IEEE Technology and Society Magazine - June 2022 - 44

Commentary
Challenge: Transitioning from
a technology-centric perspective
While there are clear opportunities within the
context of present and future modes of operation,
technology, and specifically AI-driven location solutions
alone are insufficient to facilitate the safety and
freedom of individuals living with dementia. Furthermore,
as we consider future modes of operation,
intelligent, embedded, and AI-driven LBS solutions
may exacerbate the marginalization of individuals
living with dementia or those exhibiting patterns
of behavior aligned with this neurocognitive condition.
Identifying at-risk individuals can be desirable
from the perspective of preventive and proactive
approaches to care and safety, but also provides
opportunities for exploitation, such as surveillance,
prohibiting access to certain services, and compromising
the autonomy and dignity of individuals.
Emerging from these scenarios is an evident power
asymmetry between individuals living with dementia/their
caregivers or caretakers and the entities or
stakeholders who will be in command of the LBS
systems or platforms, notably those who are responsible
for the collection, storage, dissemination, and
use of location and other contextual information
(in present modes) to individuals designing the
machine learning algorithms and smart cities (in
future modes). Socio-technical challenges concerning
privacy, ethics, security, data ownership, control,
and more must be considered in both present and
future modes of operation.
Way forward: Socio-technical co-design
In terms of a proposed path forward using a
socio-technical systems approach, this article contends
that irrespective of the technical implementation
option chosen, the emphasis of any proposed
solution or platform must be on care through participatory
design methods, such as compassionate
design [33], [35], as well as approaches that promote
stakeholder wellbeing [34], as opposed to a technology-centric
perspective. A promising and suggested
approach here is the socio-technical co-design of a
dedicated care platform, oriented toward facilitating
the safety and freedom of people living with dementia
using LBS and other complementary technologies
through convergence. The proposed platform
would be co-designed by not only the individual
living with dementia, but other stakeholders such
as caregivers/caretakers/family members, health
44
and medical professionals, law enforcement agencies,
technology providers, government agencies,
academic institutions, peak bodies, and more. This
human-centered approach will support and allow
for the integration of the requirements of individuals
living with dementia and the identified ethical/
other challenges, in the underlying design of the
proposed system, while also supporting the needs
of other stakeholders in the dementia community.
Fundamental to the process is the employment of
existing and suitable participatory approaches for
engaging individuals living with dementia [28], [32],
[42], noting that " collaborative mixes of co-design
and cocreation " may be required [36, p. 927].
Furthermore, the selecteD co-design methodologies
must be empathetic in their underlying
design and aid in desirably influencing and restoring
the self-esteem, dignity, identity, and feelings of community
connectedness of an individual living with
dementia [30]. The application of the socio-technical
co-design approach in dementia and health
context signals an important change from the dominant
technological focus in the LBS industry to the
balancing of the social dimension, which emphasizes
care, compassion, and other values such as
central to socio-technical systems design. The ideal
scenario is the simultaneous provision of safety and
freedom, through community empowerment in the
socio-technical design process, granting a voice to
community members during the design phase and
potentially the development of current and future
socio-technical solutions, location-based or otherwise.
The success of the proposed socio-technical
co-design approach is largely reliant on our willingness
to actively listen to capture lived experience
and reconcile this experience with professional
expertise in a practical design setting, to enable us
to proactively address a range of ethical challenges,
including privacy, consent, and issues of discrimination,
marginalization, and personhood.

Acknowledgments
The authors would like to express their gratitude
to M.G. Michael and Jeremy Pitt for their ongoing
support of this work. Roba Abbas would like to
acknowledge Melanie Randle and Lyn Phillipson,
who supported early national grant development
work relating to the present mode of operation.
IEEE Technology and Society Magazine
IEEE Technology and Society Magazine - June 2022

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