iStock/bin noon An expanding aging population has brought with it a growing interest in ways to help older adults live independently in home and community settings for as long as possible, while ensuring that they are still receiving adequate support and continuous care [1]. One category of technological solutions proposed is lifestyle monitoring, which involves understanding a person’s daily activities and general well-being through data collected from unobtrusive ambient sensors placed around their home [2]. Examples of activities of interest include whether medications are being taken [3], [4], whether appliances are being used or left on [5], how well the older adult is moving around their home [6], [7], or if they have had an accident or fall [3], [6], [7]. These are typically consumer-level (i.e., minimally regulated [8]) technologies that can be controlled by the older adults and, in many cases, are owned by them, allowing for the collection of data and insights that can then be used by themselves or others. The role of the technology here is not to replace human caregivers or care providers, but rather to work in tandem with them and extend their observation and assessment capabilities, making it easier to provide timely, personalized support [2], [9].
Since many forms of lifestyle monitoring are “untraditional”—that is to say, they are novel, often experimental, and do not track hard quantifiable biomedical parameters—it is perhaps unsurprising that few options exist to defray costs for older adults and their care partners.
Much of the existing research on these technologies, and on lifestyle monitoring in general, has been led by engineers, data scientists, and public health scientists. While this work has been incredibly valuable, it has meant that most of the available body of knowledge has focused on the technologies and algorithms themselves and not the context surrounding their day-to-day use. Research on the social, societal, and structural aspects of lifestyle monitoring has been much more limited, leaving many unspoken questions hanging in the air. This commentary aims to illuminate those questions, exploring them to better identify ways to move forward. These questions are as follows:
- How will the expenses associated with implementing these technologies be handled?
- Is enough being done to address the needs and concerns of all older adults?
- Considering the above, who gets left behind?
The first question, that of money, is not a comfortable one, but must be acknowledged if real-world implementation is to be seriously considered. Simply put, many of these technologies are expensive, with few ways available to reduce that cost, and many older adults have very limited disposable income [10], [11]. Many assistive technologies, including relatively low-tech ones, are already not covered by typical cost offsetting programs such as government home accessibility improvement grants, private insurance, or financial programs such as those administered by Veterans Affairs [10], [12]. Since many forms of lifestyle monitoring are “untraditional”—that is to say, they are novel, often experimental, and do not track hard quantifiable biomedical parameters—it is perhaps unsurprising that few options exist to defray costs for older adults and their care partners. Consequently, the user base is restricted to those who can pay out of pocket or are fortunate enough to be members of home care programs where these technologies are offered, many of which are themselves paid.
Different cultures have different conceptions of privacy, and many North American older adults are immigrants from highly restrictive societies where surveillance is explicitly used by governments as a means of control.
The financial costs of lifestyle monitoring technologies are not only limited to procurement of the technologies alone: installing the devices, modifying the physical structure or layout of the home to accommodate the new technologies (if necessary), servicing the technologies, and even maintaining consistent Internet connectivity each come with their own price tags [8], [13], [14]. The first two items on this list are usually anticipated and factored into the initial cost, but the latter two can often be neglected, leading to an unexpected financial burden being placed on older adults and their care partners. Servicing the technology can include installing software updates, changing batteries, fixing hardware components, and general troubleshooting [13]. The more devices there are in the home, the more potential failure points. Performing day-to-day troubleshooting often requires a baseline level of digital literacy for the older adults living in the home, which cannot always be assumed. Tech support thus becomes very important. This can come from friends or family, but if they do not have this capability or live too far away to help, this support may need to be outsourced, potentially at cost. Consistent Internet connectivity likewise cannot always be assumed, given the high cost of the necessary broadband Internet to support a lot of devices on one network [15]. This issue is particularly impactful in rural and remote areas, where Internet access may be poor [16].
Considering the various contexts in which older adults live naturally leads to our second question, which touches on the diversity of older adults and their life experiences. The varying financial means, levels of digital literacy, and support availability of older adults were all already touched on in the discussion of our first question. However, differences between older adults go far beyond this. Cognitive function and physical ability vary in any age group, but given the decline older adults may experience as they age—either due to normal processes associated with aging, or conditions such as Alzheimer’s disease or Parkinson’s disease—it is especially prudent to consider their impact here [15]. Linguistic ability and comprehension may also vary due to cognitive decline or personal historical factors such as general literacy and educational attainment [12]. Older adults who have limited proficiency in the dominant or official language of where they live (i.e., the language in which most resources are available) may additionally struggle [17]. Any of these differences, in isolation or combined, can make usability more challenging for the older adult, hamper communication around the use of the technology, and make it challenging to ensure ongoing informed consent [17].
An additional factor of critical importance, particularly within the context of this special cluster’s focus on the intersections between technology and equity, is that of race. The impact of an older adult’s race on the use of monitoring technologies does not only refer to whether devices themselves or the algorithms they utilize are as effective on dark skin and racialized features, although that is certainly an issue that should not be neglected [18]. Nor does it only refer to race-associated socioeconomic differences, which can exacerbate the access issues discussed under the first question and create compounding vulnerabilities. Rather, the key challenge here is one of trust [19], [20]. Many communities of color, particularly those of black and indigenous ancestry, have faced intense historical mistreatment, disenfranchisement, and institutional violence from the medical system in North America [19], [21]. This has been the result of both intentional and unintentional factors, such as various historical policies underlying the activities of the healthcare system, poorer access to high-quality medical services and care supports in both rural and urban areas, underrepresentation of people of color in healthcare professions, and even how the socially constructed concept of “race” itself has been used to inform biomedical protocol [21]. Notably, surveillance and monitoring have been weaponized against people of color in the past and used as a means to police their behaviors and threaten their freedom and autonomy [22]. In certain forms, both discrete and indiscreet, this weaponization carries on to the present day in much of the United States and Canada. That being said, mistrust of the healthcare system within these groups should not be conflated with resistance to receiving medical care or engaging with novel care technologies at all. Following such assumptions risks leading to exclusion, or even further deprivation. Nonetheless, these histories add complexity to any technological system that seeks to integrate surveillance and monitoring capabilities into an individual’s personal home environment.
Lifestyle monitoring has many potential benefits when it comes to supporting older adult home care, but its implementation cannot be approached haphazardly.
All this is without also considering the particular cultures and histories of older adults. Different cultures have different conceptions of privacy, and many North American older adults are immigrants from highly restrictive societies where surveillance is explicitly used by governments as a means of control [20], [23]. Therefore, a statement such as “let us monitor you in your home while you live your daily life,” with little preamble or qualifiers, is something of a tough sell. This means that it is especially important to build trust and include the perspectives of older adults from racial marginalized groups through participatory design approaches [24], [25]. Putting power into the hands of racialized older adults regarding who can access their lifestyle monitoring data and for what purpose is an essential part of building trust [25].
If current and future research does indeed indicate that lifestyle monitoring holds the potential to significantly improve the lives and care of older adults to the hoped-for degree, it is important to consider our final question. That is, who will get left behind by these innovations if we, as researchers, innovators, and key decision-makers, leave the above issues unexamined? It is clear who the “ideal” older adult is for the lifestyle monitoring use case: financially well-off, socially connected, centrally located, digitally literate, educated, non-disabled and -minded, and, if not white and nonimmigrant themselves, then at the very least unburdened by a painful history with surveillance or the healthcare system broadly. Thus, we risk benefits accruing exclusively within a very privileged in-group, to the exclusion of others. Furthermore, by continuing to design solely for this hypothetical group, the quality of the technologies themselves suffers from the lack of input from diverse voices. This is especially ironic given the proposed role of technology as a way to improve home care accessibility and choice, making assessment and care delivery from a preferred provider possible at home without the challenge and expense of travel [8]. Indeed, it could be argued that under the current state of affairs, these technologies are actually least accessible to those who have the most to gain from them, and most accessible to those for whom they are not especially useful.
With all the above in mind, I offer this list of five preliminary suggestions on how to best approach home care innovations for older adults in the future.
- Promote the inclusion of novel technologies into cost-offsetting programs: It would be highly impactful to include lifestyle monitoring under existing funding programs for assistive technologies and accessible home modifications. The role of the researcher here is, admittedly, limited, but not nonexistent. Quantifiably demonstrating the value of novel forms of assistive home care technology, including lifestyle monitoring, can help to make the case for their inclusion under funding programs. The more ways there are to make these technologies affordable for older adults, the wider the impact of the technologies.
- Create technologies to be multifunctional as much as possible: Unifying several functions under one device makes fewer discrete purchases and installations necessary, and, by extension, leads to fewer servicing needs. Therefore, this both improves cost affordability and simplifies the logistics of technology management.
- Co-design and -develop guidelines on the research, development, and communication surrounding new technologies: Technology design is only half the battle of ensuring a positive user experience: communication and instruction surrounding the technology’s use and implementation are also key. These should ideally be developed with the participation of older adults early and often.
- Prioritize cultural sensitivity when working with older adults: Care should be taken to avoid assumptions about older adults’ experiences, wants, and needs. A valuable mitigation strategy could be consulting with informants from diverse cultures to ensure that intent comes through accurately, or having several language options where possible.
- Whenever possible, maintain an open and ongoing dialog with diverse populations of older adults: Doing so serves a dual aim: improving the experience of using the technologies and demonstrating a commitment to earning trust. This should not be regarded as a symbolic gesture; rather, it is an essential step toward ensuring that these technologies meet the actual needs of their users.
This list is by no means exhaustive; access, accessibility, and trust are complex and multifaceted issues, and so it stands to reason that solutions may not be straightforward. Rather, this list is intended as a starting point to promote reflection and initiate a conversation. Lifestyle monitoring has many potential benefits when it comes to supporting older adult home care, but its implementation cannot be approached haphazardly. Being aware of the unique circumstances of older adults and not treating aging populations like a uniform mass are both critical to the success of the intervention.
ACKNOWLEDGMENTS
The author gratefully acknowledges the support and encouragement of the “Ethical Tech for a Global Future” organizing committee; the mentorship of her supervisor, Dr. Plinio Morita; and the valuable insights of her colleague, Irfhana Zakir Hussain.
Author Information
Gaya Bin Noon is currently pursuing a PhD in public health sciences at the University of Waterloo, Waterloo, ON N2L 3G1, Canada. Her research examines standards and guidelines for active assisted living (AAL)–enabled smart homes, with the goal of supporting older adults to safely age in place while receiving personalized, continuous, and integrated care. Email: gbinnoon@uwaterloo.ca.
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