Between empowerment, patronization, and surveillance. A semi-structured interview study with persons with dementia and family caregivers on the empowering opportunities and perils of intelligent assistive technologies.

Abstract

Background: Intelligent assistive technology (IAT) can contribute to the empowerment of persons with dementia by increasing independence, strengthening social participation, and improving quality of life. IAT could, however, also create new dependencies, reinforce power asymmetries, perpetuate stigmatization, and invade the privacy of persons living with dementia. To fulfill the empowering promise of new technologies and design a user-friendly IAT, users'perspectives, needs, capabilities and interests should be incorporated into IAT development and implementation from an early stage. Yet, the development and ethical assessment of IAT still tends to neglect the perspectives of potential user groups. This study explores how persons with dementia and their caregivers assess the empowering potential, opportunities, and risks of IAT.

Methods: We conducted a qualitative content analysis of 27 semi-structured interviews with persons with dementia (12) and their caregivers (15). Three technologies (GPS bracelet, dressing technology, and emotion recognition technology) were presented in the interviews using fictional case vignettes.

Results: Persons with dementia and their caregivers generally believe that IAT can potentially empower persons with dementia by improving their independence in performing daily tasks, supporting their independent mobility, increasing their physical and emotional sense of safety, and improving their social participation. The risks they identify include violations of privacy, patronization through technology, lack of user specificity, and insufficient everyday usability. Technologies are viewed very differently depending on the context, purpose of use, and user group.

Conclusion: IATs seem to have the potential to empower persons with dementia, but risks and benefits are perceived differently by the interviewees. The technology's usefulness depends on adapting to users' needs, capabilities, and interests. Future studies using a participatory approach that includes user preferences from the outset could lead to more user-centered technologies that promote the empowerment of persons with dementia.