Adapting UX Research for People Living with Alzheimer's, Dementia, and MCI: Improving the UX Research Process for Participants
Krista D. Kleban · 2024 · Proceedings of the 26th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS 2024) · doi:10.1145/3663548.3688542
Summary
This practitioner-focused paper shares first-hand lessons from conducting UX research with people living with Alzheimer's disease, other forms of dementia, and Mild Cognitive Impairment (MCI). The author, a UX researcher at the Alzheimer's Association with four years of experience leading research with this population, argues that people living with dementia must be directly included in the design process for technology intended to serve them — rather than relying solely on caregiver input or research with older adults who are not experiencing cognitive decline. The paper identifies several barriers that have historically limited participation: ethical concerns, stigma-driven assumptions that people with dementia cannot provide meaningful feedback, and a general lack of guidance on how to adapt standard UX methods for this audience. Drawing from her experience conducting moderated interviews, remote usability tests, and surveys, Kleban presents eleven practical considerations for adapting existing UX research practices rather than adopting entirely new methods. Her approach centres on flexibility, person-centred research ethics, and the recognition that every person with dementia experiences the disease uniquely.
Key findings
The paper presents eleven actionable adaptations organized across planning, recruiting, session moderation, and analysis. Key recommendations include: never timing usability test tasks, as completion time varies greatly and is not a reliable usability measure for this population; doubling both recruiting timelines and session durations compared to standard research; conducting only moderated (never unmoderated) usability sessions to provide real-time support; conducting separate sessions with caregivers and people with dementia because caregivers tend to answer or complete tasks for participants; using person-first language and avoiding triggering phrases like "do you remember"; taking a conservative approach to think-aloud protocols by asking participants only to flag things they find challenging rather than narrating every action; and mirroring participants' communication styles to build rapport. The author also emphasizes managing stakeholder expectations — educating them that incomplete data is still valuable, that incremental progress matters, and that usability standards may need to differ between people with dementia and other users.
Relevance
This paper fills a notable gap in accessibility research methodology. While substantial literature exists on conducting UX research with people who use assistive technologies or have sensory or motor disabilities, very little guidance addresses cognitive impairment specifically. With over 55 million people worldwide living with dementia (WHO, 2022) and growing development of technology targeting this population — including safety devices, home monitoring, reminiscence programs, and socialization tools — the need for inclusive research practices is urgent. The practical, experience-based nature of the recommendations makes them immediately applicable for UX teams. The paper also raises an important broader point: given the prevalence of dementia and MCI, these adaptations are relevant not just for dementia-specific products but for any digital product used by the general population. Limitations include the lack of formal empirical validation of the recommendations and the single-practitioner perspective, but the paper serves as a valuable starting point for a topic that needs far more attention in the HCI and accessibility communities.
Tags: cognitive accessibility · dementia · Alzheimer's · UX research · usability testing · inclusive research methods · participatory design · mild cognitive impairment