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Dementia is a syndrome that involves changes in cognition (thinking, remembering, and reasoning) and abilities, often affecting the ways that individuals engage in daily activities. Many everyday technologies are not designed to meet the access needs of individuals with dementia. Recent research shows that almost half of those with mild cognitive impairment and mild dementia use smartphones, providing the opportunity to study the purposes for which people with dementia use their mobile phones, what challenges they face, and how their use could be better supported. 

A recent paper reports on a study of the current use of mobile phones by people with dementia as an effort to better understand how to design for these users. It was written by recent University of Maryland College of Information Studies PhD Emma Dixon; collaborators from Google, Rain Michaels, Xiang Xiao, Yu Zhong, Patrick Clary, and Ajit Narayanan; Dr. Robin Brewer of the University of Michigan; and Dr. Amanda Lazar, assistant professor at the UMD College of Information Studies and core faculty at the Trace R&D Center. 

The study involved semi-structured interviews, conducted remotely via Zoom, with 14 people with mild to moderate dementia. Participants were asked about their current mobile phone use and any challenges they face in using their phone and then asked for their ideas about possible solutions for these challenges.  

Mobile Phone Use and Challenges Reported by People with Dementia

The study found that participants rely on their mobile phones to support changes in their cognitive ability and emotional regulation, and to stay productive and manage their health. They report using their mobile phones for a wide variety of activities, including social media, navigation, online shopping, banking, news, music, games, entertainment, productivity/work (e.g., advocacy, volunteering), and health management (e.g., medication reminders, collecting and keeping track of medical data and results). 

Study participants report a number of challenges they face in using their mobile phones including:

• navigating to apps and needed features;
• performing tasks when stressed or fatigued, or under time pressure; and
• re-learning task flows after updates or upgrades. 

For example, if an individual realizes they are lost or disoriented, they may be unable to  find the person they want to call for assistance because they forget to scroll in the contact list. Feeling pressured by having others waiting behind them in line may make it difficult to go through all the steps to enter an appointment into their calendar. Using voice-based systems may be highly stressful because they may not be understood or may misspeak. 

 

Ideas for Addressing Challenges

When asked to describe some ideas for ideal support that would help overcome these identified challenges, participants shared a number of ideas including: customizable interfaces, activity-based customization, proactive technology assistance, and richer voice-based interactions.

Customizable user interface: 

Participants talked about changing the size of apps and customizing the look of icons. There was interest in a pre-specified “easy version” of their phone that hides apps and features they don’t use or want.

Activity-based customization:

To make it easier to navigate their mobile phones, participants described the desire to bundle common activities and store them in distinct places. For example, having a group of their most important contacts available in one spot that was easy to find, or apps grouped together that were needed for in-home activities versus activities outside of the home.  

Proactive technology assistance: 

There was interest in mobile phones taking action on users’ behalf without them asking for assistance. For example, one participant described the phone learning the types and number of reminders (e.g., at one-day, one-hour, five-minutes, and at the start time) that the user typically sets for a calendar entry, and setting them automatically. Other specific ideas included: recording doctors’ visits, reminding the user to reach out to a contact they haven’t emailed or texted in a while, and identifying new or unused phone features that could be of use and offering tutorials. 

Voice-based interactions: 

Participants described ideas about more robust voice-based interactions that could help users find the right apps and navigate within them to complete tasks. For example, a voice assistant that could ask questions and help a user set a calendar reminder through a series of natural language prompts. Support to provide the user with access to human assistance in instances when voice assistants did not understand them was also discussed.

 

Design Opportunities

Based on these interviews, the researchers identified some design opportunities for mobile phones that would better meet the needs of people with dementia. Two areas outlined in the paper are adaptive user interfaces to accommodate progressive changes in ability and proactive technological support.

Adaptive user interfaces for progressive changes in ability:

Customizable home screens, adjustable app sizes and personalizable icons are all design possibilities that could accommodate the progressive changes in ability that people with dementia experience. In addition, displaying the most used features in a way that is easy for people with mild to moderate dementia to navigate to, while still providing access to less used features if and when they want them. Finally, this research points to the possibility of a mindset shift that involves moving from designing interfaces based on the applications to thinking about the interface as based on human goals (i.e., the tasks a user wants to achieve in a certain context).

Proactive technological support:

Technology that anticipates a user’s needs based on the context could support people with dementia in important ways. If your mobile phone could recognize your location and your conversational partner, it could prompt particular tasks given that context. For example, when the phone user is at the doctor’s office at the time her calendar has an appointment entry, the user could be prompted to pull up the saved questions or medical information needed for the conversation with the doctor. Another example is monitoring email and text messages to prompt responses to unanswered communications or to encourage reaching out to a usual contact that the user hasn’t interacted with for a period of time.

 

Certainly some of these design possibilities involve tensions regarding privacy concerns, the loss of some autonomy of users, and the risk of abuse. However, some people with dementia may be willing to make tradeoffs that can help them remain active in everyday activities. Keeping humans in the loop and using the technology to support connecting users to trusted friends and loved ones is critical for navigating some of these tensions.

To explore more work by Dr. Lazar and her team on Understanding Accessibility Needs in Dementia, visit the project page for this research. This work is supported by NSF Grant IIS-2045679, the National Science Foundation Graduate Research Fellowship Program under Grant No. DGE 1840340, and the Inclusive Information and Communications Technology RERC (#90REGE0008) from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), Administration for Community Living (ACL), Department of Health and Human Services (HHS) and by the National Science Foundation (#1816380). Learn more about the work of the Inclusive ICT RERC.

Dixon, E., Michaels, R., Xiao, X., Zhong, Y., Clary, P., Narayanan, A., Brewer, R, & Lazar, A. (2022). Mobile phone use by people with mild to moderate dementia: Uncovering challenges and identifying opportunities. In ASSETS ‘ 22: The 24th International ACM SIGACCESS Conference on Computers and Accessibility. New York: ACM.