How People with Dementia Access Health Information: Research Identifies Barriers, Strategies, and the Potential for New Technologies
Dr. Amanda Lazar and her team presented recent research at the 2022 ACM CHI Conference on Human Factors in Computing Systems examining the barriers faced by people with dementia to accessing relevant, accurate health information, as well as the potential for AI-driven tools to support different types of memory. The inclusion of people with dementia at every stage of the research process is a key component highlighted by their work.
Even before the pandemic had us googling every possible symptom as a potential sign of a covid infection, the Internet was well established as an important source for accessing health information. Unsurprisingly, the ease of access to accurate and relevant online health information varies significantly among different populations of users. People experiencing dementia are one such user group who face particular barriers, and they are the focus of research by Dr. Emma Dixon (recent iSchool PhD graduate) and Dr. Amanda Lazar, assistant professor at the UMD iSchool and core faculty at the Trace R&D Center. According to the World Health Organization (WHO), around 55 million people worldwide are living with dementia, a number expected to double almost every 20 years, making this research even more critically important.
Seeking to identify the barriers to accessing online health information and to learn how users attempt to overcome them, Dixon, Lazar, undergraduate Jesse Anderson, and dementia experts Mary Radnofsky and Diana Blackwelder conducted interviews and observation sessions with 16 people with mild to moderate dementia. The resulting paper, “Barriers to Online Dementia Information and Mitigation,” was recently presented at the 2022 ACM CHI Conference on Human Factors in Computing Systems.
An analysis of the interviews and observations led the researchers to identify four barriers as well as a number of mitigation strategies that people with dementia use to deal with those barriers.
- People with dementia find a lack of online health information about their specific type of dementia that is relevant to them, rather than to caregivers or clinicians.
- Too often the information is overly pessimistic, painting a bleak picture of their lives and their futures that makes the information emotionally inaccessible. Health information about dementia is also frequently cognitively inaccessible because of text length or the use of jargon.
- Often the health information that people with dementia find online is outdated or purely anecdotal, and therefore may be inaccurate or oversimplified.
- A final barrier identified in this research is that information is sometimes found on web-pages that elicit distrust because they require visitors to enter personal information or they appear to have hidden agendas. The personal information may be for the recruitment of research trial participants, but users fear they are being sold a product or service, or may be the victims of more insidious exploitation.
Despite all of these significant barriers, the team found that people with dementia are navigating online health information using their ingenuity as individuals and as a community. Sometimes they simply make due with what they can find. They may need to reduce their exposure to certain types of information or search for alternative formats that are more accessible. To assess the accuracy of information, people with dementia may consider the source of the information or use online communities of people with dementia to collaboratively examine the information to decide if it is trustworthy.
Critical to surfacing their findings, this study employed an “action research” approach, actively including two people living with dementia who served as “dementia experts” on the research team. Dr. Radnofsky and Ms. Blackwelder were active in every stage of the research, including scoping the research, interviewing participants, analysis and writing, and presentation of findings. Their participation was critical for better communication with and a more in-depth understanding of the experiences of study participants.
Dr. Dixon, Dr. Radnofsky, and Ms. Blackwelder will present some of the study’s findings at the Alzheimer’s Disease International conference in London, UK in June. They will discuss the ways that people with dementia use a variety of online information behaviors to achieve a state of balance between their mental framework and the environment. For example, after actively searching for dementia information online and encountering extremely negative messaging, participants start to avoid specific dementia topics they found to be emotionally triggering (e.g., stages in the progression of dementia). By adapting to changing circumstances and needs, people with dementia can continue to engage in life, while living with a degenerative neurological condition.
The next step is for these findings to be applied by human-computer interaction (HCI) researchers to develop new technical approaches and standards to make health information more accessible to neurodiverse populations. Some approaches will be helpful for individuals with many types of cognitive impairments. For example, using certain fonts, providing summaries of research, or presenting health information in video formats can increase accessibility. Other approaches that could specifically address barriers for people with dementia may include tools to analyze tone and remove bias from the presentation of health information to make it more emotionally accessible.
Considerations about how to make it easier for people with dementia to assess the credibility of sources is also important. For example, design elements that look like advertisements or forms that require entering personal details are significant barriers that could be easily overcome with attention from information providers.
Another thread of research from Dr. Lazar’s team is identifying opportunities for future technologies to support people with dementia, which was also presented at the recent CHI conference. This late-breaking work, led by Computer Science PhD candidate Hanuma Teja Maddali “Investigating the Potential of Artificial Intelligence Powered Interfaces to Support Different Types of Memory for People with Dementia,” examines how people with dementia feel about artificial intelligence (AI) and the possibilities for future AI-based devices that could support people with dementia-related changes in different types of memory.
This work explores the potential for AI-driven interfaces to support both prospective and retrospective memory.
Prospective memory is important for tasks that are routine (e.g., brushing teeth), require vigilance (e.g., turning off the water so the bathtub doesn’t overflow), or need to be performed at certain times or places (e.g., what to do in the grocery store). AI-based devices could gather information about a user’s daily routine and habits and interact with the user to provide reminders. For example, the device might remind a user to take a daily medication or to make sure they turn off the stove after making dinner.
Retrospective memory involves our past experiences — people and events that have meaning to us — and is important for remembering facts and ideas. Supports that an AI-driven device might provide might include interacting in moments of confusion to remind a user where they live or even the emotional context of a photograph.
It is important that the AI understand the magnified cost of memory lapses when living with dementia. This is especially true in social situations when, for example, reminding the user of the dress code can be extremely helpful. The work also discusses people with dementia’s expectations around how the AI should interpret a need for assistance and how it presents itself (e.g., as an invisible helper or a friendly gentle voice). While some situations may call for proactively adapting an interface, in other situations the users expect that the AI explicitly asks for permission to assist.
A common thread in these two research projects is how essential it is to include the perspectives of people with dementia in the design of technology for their use. Listening to people with dementia can’t be the last step as part of usability testing. Rather, people with dementia must be included in the research from the beginning, not only as study participants but also as active members of research teams who are seeking to understand information needs and anticipating the barriers presented by new technologies.
May is Older Americans Month, and observance of this month is led by the Administration for Community Living (ACL), which funded this work through a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (#90REGE0008).
“In 2022, ACL is focusing on aging in place – how older adults can plan to stay in their homes and live independently in their communities for as long as possible. The 2022 theme is Age My Way, an opportunity for all of us to explore the many ways older adults can remain in and be involved with their communities.” You can read more information about Older Americans Month and ACL here.