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Usable Does Not Mean Used: Going Beyond Usability to Engage Dementia Caregivers with Mobile Health Technology
Event Type
Poster Presentation
TimeThursday, April 152:43pm - 2:45pm EDT
LocationDigital Health
DescriptionThere are a great deal of mobile health interventions designed to optimize the self-efficacy of informal, Alzheimer’s caregivers, but the majority of caregivers rarely adhere to using these resources long-term. The abandonment of these technologies in turn provides little to no positive, lasting effect on the caregivers as intended. It is not enough to make mobile health usable. It is time to make mobile health engaging.

Alzheimer’s disease is a prominent type of dementia and is recognized as a leading cause of death in the United States projected to continue to detrimentally affect the aging population for the foreseeable future (Alzheimer’s Association, 2020). The economic burden of Alzheimer’s disease on the nation’s healthcare system is immense and reportedly cost over $300 billion in 2020. Technological interventions such as mobile health are effective, economical resources for healthcare management for informal, home-based caregivers for individuals with AD (Ruggiano et al., 2019). As the nation continues to age, older adults are also turning to technology at increasing rates for assistance in administering care. The unpredictability and severity of AD presents a complex design challenge for researchers and designers as technology continues to be a popularized modern healthcare solution for chronic disease management by consumers. Usability is accepted as a necessary component of mobile health design to make sure that the technology is effective and used as intended, and thus is one critical element to improved user performance (Brown & Kim, 2018).

Notably, some have achieved useful and usable mobile health technology design, however, there is clear evidence that usability is not enough. Numerous studies (e.g., clinical trials and randomized controlled trials) sought to investigate AD caregivers’ experience with mobile health technologies but reported small positive effects of the technologies observed by the caregivers (Deeken et al., 2019). The gap in the intended effect was due to difficulty implementing technology-based interventions with this demographic, difficulty assuring the technology was administered and used as planned, and high attrition rates. Considering these outcomes, it was apparent that the caregivers were not engaged with the technologies provided to them which ultimately led to abandonment of the technology even though they were designed for the caregivers’ success.

This presentation will establish that engaging older adult AD caregivers with mobile health technology is a wicked problem that the human factors community needs to resolve. Engagement with technology is more generally the next step beyond usability. Addressing engagement is a necessary goal within the purview of human factors. If the problem of engagement with technology persists, then the intentions and benefits of even the most usable technology, value of future related research, and improvements to the quality of life of those affected by AD will never be fully realized.

The purpose of the presentation is to raise awareness of this engagement problem by beginning the presentation with a brief overview of the epidemic of Alzheimer’s disease followed by evidence of the engagement failures within published studies as well as our own failed attempts to engage older adult AD caregivers with mobile health technology. We will discuss our preliminary data findings and our recent attempt to host a social experiment via Zoom with participants in our pilot randomized controlled clinical trial (Braly et al., 2021). Our own participants as part of this pilot study were showing signs that they were not engaged with our mobile health application, Brain CareNotes (BCN), and in an attempt to provide them with a platform to share their experience with BCN thus far, the response and participation was very low and analogous to our data findings. We will also discuss potential strategies to effectively solve the engagement problem.

The key takeaway points of this presentation are the following:
1) Usability within mobile health technology design is necessary but insufficient. Optimizing user engagement with the technology is a critical next step. Without engagement, the technology may just “sit on the shelf”.

2) Engaging older adult AD caregivers with mobile health technology is a significant problem that needs to be solved if the benefits of targeted healthcare interventions will ever have a chance at being fully realized and fully utilized as intended.

3) Older adults are neither engaged with nor using the interventions created for them despite the technologies being tailored to their needs.

4) Numerous studies investigating AD caregivers’ experience with mobile health technology all showed evidence of faltering when engaging the participants. This lapse will continue to be a problem for all related studies until a solution is reached.

5) Using prehistoric and ineffective nudges (i.e., reminders, alerts, phone calls, etc.) do not work.

6) The Human Factors community and others need to be more concerned with engagement than we are now.

References:

Alzheimer’s Association. (2020). 2020 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, 16(3), 391-460. https://doi.org/10.1002/alz.12068

Braly, T., Muriathiri, D., Brown, J. C., Taylor, B. M., Boustani, M. A., Holden, R. J. (2021). Technology intervention to support caregiving for Alzheimer’s disease (I-CARE): Study protocol for a randomized controlled pilot trial. Pilot and Feasibility Studies, 7(23). https://doi.org/10.1186/s40814-020-00755-2

Brown, J. & Kim, H. N. (2018). User-centered designs of Alzheimer's mHealth applications. Proceedings of the 2018 Human Factors and Ergonomics Society International Annual Meeting, Philadelphia, Pennsylvania.

Deeken, F., Rezo, A., Hinz, M., Discher, R., & Rapp, M. (2019). Evaluation of technology-based interventions for informal caregivers of patients with dementia – A meta-analysis of randomized controlled trials. Am J of Geriatric Psychiatry, 27(4), 426-445. https://doi.org/10.1016/j.jagp.2018.12.003

Ruggiano, N., Brown, E. L., Shaw, S., Geldmacher, D., Clarke, P., Hristidis, V., & Bertram, J. (2019). The potential of information technology to navigate caregiving systems: Perspectives from dementia caregivers. Journal of Gerontological Social Work, 62(4), 432-450. https://doi.org/10.1080/01634372.2018.1546786