Authors:
Clara Berridge, Anne Turner, Oleg Zaslavsky, Carolyn Parsey
We are four dementia researchers from different clinical corners of the health sciences (social work, public health, nursing, and neurology). We develop online interventions for older adults living with dementia and want to communicate to HCI researchers the need to address key questions of design for this population, made more pressing by Covid-19.
We're interested in population-informed design to help counter the digital marginalization of older adults. We're writing to ask for your attention to design questions, such as those that are stumping us while we develop tools to engage people meaningfully in their care. We're inspired and encouraged by the work of the small group of HCI researchers informed by and contributing to critical dementia studies [1] and want to underscore its importance by first providing some context about why the digital marginalization of people living with dementia (PLWD) is an urgent problem.
Insights
Anthropologist Janelle Taylor has described the social acceptability in the U.S. of abandoning friends who acquire dementia, with significant consequences for the person living with dementia and care partner (if they have one)—also a group likely to experience isolation [2]. The term dementia friendly is used in initiatives across the globe, such as "dementia-friendly cities," implying if not friendship, then at least kindness and hospitality—opposite notions to stigma, fear, and shame. During the pandemic, hundreds of thousands of PLWD were thrust into social isolation and cut off from health and social services by Covid in combination with inequities in access to broadband, hardware, training, and, in some cases, alternatives to tech-mediated services. For many, problems of access caused by digital marginalization predated the pandemic.
The pandemic has underscored that a movement to counter the isolation and social exclusion that often accompany dementia is long overdue. Thoughtful design has a critical role to play; public places and services like transportation may be abandoned by PLWD when they are not designed to be dementia friendly [3]. Yet, it does need to be said that the social inclusion and rights of people living with dementia cannot be reduced to a technical problem. Others, such as Aimi Hamraie [4], have articulated the problems of conflating access with justice. New products—as brilliantly attentive and inclusively designed as they hopefully can be—will not solve this deeper social issue rooted in ageism and ableism. But it is crucial that they don't further entrench it.
As HCI and STS researchers understand well, sociotechnological relations and practices are circular: technology, aging, dementia, and older adults living with dementia are co-constituted [5]. Devices or systems come with ideas about the user inscribed in them—and in the case of gerontechnologies, those ideas often turn out to be pretty limited and thus limiting [6]. Dementia-care technologies are shot through with ethical issues and often reflect the biomedicalization of dementias. They tend to enable surveillance in the context of unbalanced power relations and prioritize caregivers' needs and values. A medical model is dominant, but we are beginning to think about dementia as disability, which opens a rich field of generative influences in activism, in the disability justice and abolition movements, and in critical thinking about crip technoscience.
In our work, which is grounded in care settings and relationships, we are constantly challenged to move beyond the standard Western bioethical principles to think deeply about the role design plays in power dynamics. Oliver Burmeister and David Kreps provide a case study of a design project in a nursing home, where a compromise was achieved by adapting data collection to better meet the privacy needs of residents. They remind us that even in these settings, "[d]esign needs to be clear about the exercise of power. For the technological designer, it should always be as intentional as possible, rather than allowing power to be exercised in an intuitive or unconscious manner" [7]. We imagine, given the enthusiasm for AI applied to social problems, that it's not difficult for designers to become complicit in promoting those understudied technologies that may worsen the problem of isolation, such as certain AI-based companion robots described as "problematic" by some domain experts [8]. Given the important role human contact plays in the lives of people living with dementia, we agree with Kellie Morrissey and colleagues, who assert that designers should work on technologies that enrich copresence "rather than provide a facsimile of it" [9]. Being attentive to a wide range of implications shaped by the context in which these tools will be used is a responsibility of designers. That level of attentiveness will often require interdisciplinary collaboration.
Design Questions from the Health Sciences
Attentive learning is also needed to build for PLWD. We believe that adapting and tailoring tools for the changing capacities and needs of people living with dementia will be critical to countering their digital marginalization. Each of us is developing Web tools intended to enhance the health, well-being, or control experienced by PLWD. One tool's goal is to enable people living with mild dementia to participate knowledgeably in decisions about how monitoring technology should or should not be used in their care—to personalize for informed use, conditioned use, or refusal. Another tool is intended to surface preferences about supportive care transitions using discrete-choice experiments, since PLWDs' preferences are often overlooked in decision making. This tool will help keep the person's voice in decision making even as the disease progresses. A third is to help PLWD make informed nutritional choices. Healthy eating is a common non-pharmacological approach to reduce risks of frailty and brain degeneration, but few interventions are tailored to PLWD. The fourth is investigating self-driven personalization for reminiscence of music, art, and film.
In the process, we are running into unanswered HCI questions that we don't have the training and expertise to address. Below we note some specific questions about dementia-design interactions we need answers to in order to create better tools. Our intention is to motivate further pursuance of answers and new questions about designing for PLWD in HCI.
People often think of loss when they think of dementia, but some functional capacities are not diminished by most dementias, including sensory and motor functions if unaffected by other chronic conditions or age-associated changes. Dementia exists on a spectrum, and many skills remain intact for years, including remote memory, basic attention, verbal and written expression, and emotional and sensory experience. This presents myriad untapped design opportunities. For example, PLWD can often access remote personal memories, and specific content can tailor an experience, such as music, for improved emotional and behavioral outcomes.
However, many who are living with dementia experience short-term memory loss, language comprehension issues, difficulty planning or making decisions, and trouble anticipating their future needs. This poses a challenge for participatory design and for selecting preferences related to future changes or choices.
We hope to learn how to design questions to stimulate prior memories and ensure concept understanding. What forms and formats of questions are most likely to be understood by people living with dementia? How many selection options are optimum? How long (i.e., how much time to complete) should a Web tool be?
And what roles do different senses play in enhancing recall and articulating choices? Can visualizations, sounds, and other modalities help anchor individuals to past experiences and assist them in planning for the future? What kinds of images (i.e., icons versus photos) help best? How might we optimally pair audio with captioning? What are effective ways to accommodate noninformative or semi-informative responses (e.g., do not remember) in self-report tools? If ecological momentary assessment—type tools are used, what is a reliable recall period that can be asked about?
We have experienced rich opportunities for learning from people with early dementia in design processes. Our healthy eating project, in which we interviewed and conducted experience sampling in a small group of adults with early dementia, showed that even though participants were receptive to digital tools, they found comfort in hybrid solutions that blended analog and digital worlds. Participants expressed more interest in a physical cookbook paired with our app than in simply an electronic copy. This leads us to ask, what is a good balance between physical and digital tools? Another design recommendation from this work was that PLWD valued recognition over recall by accepting more frequent check-ins delivered through more than one modality.
Attentive HCI research to illuminate what designs, forms, and formats are best for designing tools for people living with dementia and how to better design and assess the usability/usefulness of these tools for this group could help designers build on retained capacities to make better tools for clinical uses. We believe that by designing knowledgeably with people living with dementia, digital tools can better align with their capabilities and needs to further support engaged, enjoyable, and meaningful lives.
References
1. Lazar, A., Edasis, C., and Piper, A.M. A critical lens on dementia and design in HCI. Proc. of the 2017 CHI Conference on Human Factors in Computing Systems. ACM, New York, 2017, 2175–2188; https://doi.org/10.1145/3025453.3025522
2. Taylor, J.S. Engaging with dementia: Moral experiments in art and friendship. Cult Med Psychiatry 41, 2 (2017), 284–303. DOI: 10.1007/s11013-017-9528-9. PMID: 28378036.
3. Gaber, S., Nygård, L., Malinowsky, C., Brorsson, A., Kottorp, A., and Hedman, A. Enacting citizenship through participation in a technological society: A longitudinal three-year study among people with dementia in Sweden. Ageing and Society (2021), 1–22. DOI: 10.1017/S0144686X21000544
4. Hamraie, A. Video: Making access critical: Disability, race, and gender in environmental design. UC Berkeley Othering and Belonging Institute. Feb. 25, 2019; https://belonging.berkeley.edu/aimihamraie-making-access-critical-disability-race-and-gender-environmental-design
5. Peine, A. and Neven, L. The co-constitution of ageing and technology—a model and agenda. Ageing and Society 41, 12 (2021), 2845–2866. DOI:10.1017/S0144686X20000641
6. Berridge, C. Active subjects of passive monitoring: Responses to a passive monitoring system in low-income independent living. Ageing and Society 37, 3 (2017), 537–560. DOI:10.1017/S0144686X15001269
7. Burmeister, O. and Kreps, D. Power influences upon technology design for age-related cognitive decline using the VSD framework, Ethics and Information Technology 23 (2021), 95–98; https://doi.org/10.1007/s10676-018-9460-x
8. Berridge, C., Demiris, G., and Kaye, J. Domain experts on dementia-care technologies: Mitigating risk in design and implementation. Science and Engineering Ethics 27, 14 (2021); https://doi.org/10.1007/s11948-021-00286-w
9. Morrissey, K., McCarthy, J., and Pantidi, N. The value of experience-centred design approaches in dementia research contexts. Proc. of the 2017 CHI Conference on Human Factors in Computing Systems. ACM, New York, 2017, 1326–1338. DOI:10.1145/3025453.3025527
Authors
Clara Berridge is an associate professor in the School of Social Work and core faculty in the Disability Studies Program at the University of Washington. She works at the crossroads of critical gerontology and gerontechnology, focusing on the ethical and policy implications of data-intensive technologies for elder care. [email protected]
Anne M. Turner is a professor in the School of Public Health at the University of Washington. She is a physician who focuses on developing health technologies to improve the lives of underserved populations, including older adults, individuals living with dementia, and individuals with limited English proficiency. [email protected]
Oleg Zaslavsky is an associate professor in the School of Nursing at the University of Washington. His work lies at the intersection of technology and aging, where he develops digital solutions for older adults with frailty, people living with dementia, and people providing care for their loved ones. [email protected]
Carolyn Parsey is an assistant professor and board-certified clinical neuropsychologist in the Department of Neurology within the University of Washington School of Medicine. Her clinical and research focuses include development and intervention trials of technologies for people with dementia to promote independent living for as long as possible. [email protected]
Sidebar: RESOURCES
Here are some resources for those interested in learning more about critical gerontology, dementia studies, Alzheimer's disease, and socio-gerontechnology:
Socio-Gerontechnology Network: https://www.socio-gerontechnology.net/mission-and-aim/
North American Network in Aging Studies: http://agingstudies.org/NANAS/
European Network in Aging Studies: http://www.agingstudies.eu/
Critical Dementia Network: https://bit.ly/2NAt0yD
Alzheimer's Association: https://www.alz.org/research
Alzheimer's Disease International: https://www.alzint.org/what-we-do/research/
International Society of Gerontechnology: https://www.gerontechnology.org/
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