Domain Experts on Dementia-Care Technologies: Mitigating Risk in Design and Implementation

Abstract

There is an urgent need to learn how to appropriately integrate technologies into dementia care. The aims of this Delphi study were to project which technologies will be most prevalent in dementia care in five years, articulate potential benefits and risks, and identify specific options to mitigate risks. Participants were also asked to identify technologies that are most likely to cause value tensions and thus most warrant a conversation with an older person with mild dementia when families are deciding about their use. Twenty-one interdisciplinary domain experts from academia and industry in aging and technology in the U.S. and Canada participated in a two-round online survey using the Delphi approach with an 84% response rate and no attrition between rounds. Rankings were analyzed using frequency counts and written-in responses were thematically analyzed. Twelve technology categories were identified along with a detailed list of risks and benefits for each. Suggestions to mitigate the most commonly raised risks are categorized as follows: intervene during design, make specific technical choices, build in choice and control, require data transparency, place restrictions on data use and ensure security, enable informed consent, and proactively educate users. This study provides information that is needed to navigate person-centered technology use in dementia care. The specific recommendations participants offered are relevant to designers, clinicians, researchers, ethicists, and policy makers and require proactive engagement from design through implementation.

Control Matters in Elder Care Technology: Evidence and Direction for Designing It In

“…We know you may not have a primary support person now but please think about it in terms of your family member or friend who would care for and look out for you. markers [18,112], which involves audio capture in the home. Location tracking is becoming ubiquitous [25,48], and the problem of social isolation during COVID is further spurring the evolution of telepresence [64,87].…”

“…Our survey also presents fve control options derived from the Delphi study, where experts produced ideas for how to mitigate risks that they had identifed. The fve control options we chose for the current study are the most commonly endorsed risk mitigation strategies from this past work [18]. These risk mitigation strategies are:…”

Advance Planning for Technology Use in Dementia Care: Development, Design, and Feasibility of a Novel Self-administered Decision-Making Tool

“…The dominant risks and challenges that are innate to passive monitoring are in conflicts among privacy, autonomy, freedom, and safety and risk management [24]. Potential risks include isolation through reduced human interaction and hands-on care, privacy invasion, loss of control, data inaccuracy, and reduced behavioral autonomy [14,16,17,22,[25][26][27][28][29][30][31][32][33][34][35][36]. Research indicates that it is not easy for older adults on their own to appreciate what it will be like to be monitored [37].…”

“…Helping families navigate the complex technological landscape is a timely goal. Researchers often highlight the core ethical problem of achieving informed consent with an individual living with dementia [14][15][16][17][18]. They have demonstrated the need for tools to support education, awareness, and decision-making about technologies used to support care [16,[19][20][21], including forward-looking consent processes before dementia undermines informed preference formation or expression [22].…”

Design for dementia

“…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 designing for PLWD in HCI.…”