It is a universal truth that we will age and grow older. For many Canadians, there will come a day where they cannot safely live independently in their own homes. In 2016, 32% of Canadians aged 85 and older had moved from their homes into collective housing, including nursing homes and seniors’ residences. This number grows to 67% among the centenarian population. Yet a recent study by the National Institute of Ageing demonstrates that almost 100% of Canadians aged 65 and older want to live independently in their own homes for as long as possible. Perhaps unsurprisingly then, 70% of Canadians aged 50 and older are willing to pay out-of-pocket for technology that allows them to stay at home as they age (AGE-WELL).

In winter 2022 we hosted a discussion on how "Smart Home" technology might disrupt aging in Canada. Bruce Wallace (Executive Director of the AGE-WELL National Innovation Hub) was joined by Frank Knoefel (a physician at the Bruyère Memory Program and senior investigator at the Bruyère Research Institute) and Krista James (lawyer and the National Director of the Canadian Centre for Elder Law). A recording of the event can be seen here.

Wallace describes the Smart Home as a broad research area of huge potential. The ultimate goal of AGE-WELL’s research is independence and aging in place: “how,” he asks, “can we use technology to support people living at home longer, safer, avoiding entry to care, and at the same time, minimizing burden on family caregivers?”

While there are a number of different Smart Home technologies in development – and already on the market – the discussion centred on sensors which gather and analyze data, placed strategically throughout the home of an aging adult. A Smart Home system of this nature will perform an ongoing assessment of the adult’s well-being and in turn create cues, reminders, and support for them. The acquired knowledge can also be shared with the adult’s care teams – whether healthcare providers or concerned loved ones – allowing them to respond to risks as they see fit.

Case Study: Wander Detection and Diversion

Imagine, if you will, a person living with dementia (PLWD) awakens in the middle of the night. They leave their bed and venture into the hallway – in seeking to use the washroom, they become disoriented. While there is likely little risk within this person’s own home, immense risk exists beyond their front door – particularly in places such as Ottawa where winter temperatures can be so unforgiving.

As a result, the person’s care partner – whether a spouse, child, or sibling – lives in constant fear that harm will befall their loved one while they sleep.

This is where Smart Home technology comes into play. A Wander Detection and Diversion (WDD) system would direct the PLWD back to bed, allowing their care partner to sleep peacefully. As Wallace explains, given that the PLWD is simply trying to find the washroom, the smart home could provide them with visual cues to gently direct them to the right place – turning on the washroom lights, and turning them off again once the person has returned to their bedroom. If the PLWD does not return directly to their bedroom, a smart speaker could play a recording of their care partner’s voice, encouraging them, “honey, it’s the middle of the night, come back to bed.” In this scenario, the care partner would only be awoken if their loved one proceeds to the front door. Thus, the PLWD is protected from potential harm while their care partner can sleep without worry.

For Whose Benefit?

The primary purpose of Smart Home Technology in this context is two-fold: to prevent (re)admission of aging adults to hospitals or care facilities, and to put options on the table so they can decide where they would like to age and what kinds of supports they may need moving forward.

Yet the use of this technology comes with a plethora of legal and ethical concerns – primary among them being the question of who this technology is actually benefitting.

The WDD example above provides a benefit to the PLWD (safety), but also provides their care partner with significant benefits, namely less stress and uninterrupted sleep. Indeed, AGE-WELL recently ran a WDD system trial, and as Wallace explains, it was extremely well-received: care partners were able to sleep better and were far less stressed, knowing that their loved ones would be redirected back to bed by their supportive Smart Home. But what happens, asks Knoefel, “if the sensors are actually providing more support to the caregiver than the participant themselves?”

In examining where Smart Home technology fits in the aging adult-care provider relationship, the panelists raised three legal and ethical areas of concern: autonomy, consent, and privacy.

AUTONOMY

“In the end,” asks Knoefel, “who has the right – or even the responsibility – to make a decision about installing technology?”

Perhaps inherent in the use of Smart Home technology (and particularly in the homes of aging adults), he argues, are autonomy trade-offs. For many aging adults, smaller losses to autonomy through the installation and use of this technology will be outweighed by the long-term autonomy benefits of staying in their own homes.

Autonomy, of course, is the making of informed and uncoerced decisions. And in making such decisions, stresses James, it is important to remember that things which enhance the quality of life of caregivers may not enhance the quality of life of the PLWD. Has the aging adult purchased the technology themselves to live in comfort and security? Or is someone else seeking to install the technology for their own assurance that the older person is safe?

As James expresses, “elder law is full of stories of younger folks trying to control older people – from a very well-meaning, life preserving perspective – and make choices about what kind of situations are safe for them. That approach to thinking about the lives of older people can be very paternalist and ageist, and is often not welcome to older people.”

She goes on to say that any analysis of benefit and risk should be centered on the older or disabled person in question and their lived experiences – any benefit or burden on younger people should be a secondary or peripheral factor.

Ultimately, she argues, decisions about how we live our lives should be based on what matters to us, not what matters to other people: “a lot of what gives life meaning is the ability to choose what we do with our lives and what kind of risks we’re comfortable with.”

And in examining questions of autonomy, she holds that “safety is not an absolute measure of quality of life” – asking, “what about freedom? What about joy?”

INFORMED CONSENT

Informed consent is fundamental to the provision of healthcare services. But how is informed consent framed in this context? And what happens when the aging adult experiences a change in their capacity to consent? Consent is not a one-and-done checkmark on a form – it is an ongoing process requiring conversations about risks and benefits. But how does this continuous process of consent work, then, when people consent to the use of Smart Home technology during its installation, but down the road are no longer aware that they are being surveilled?

According to James, the ability to consent in advance to Smart Home technology does not yet exist in the same way that other advance directives do. Indeed, the ever-evolving nature of technology would make it incredibly difficult to consent in advance when Smart Homes could evolve faster than the PLWD’s understanding thereof. Similarly, dementia itself is an evolving condition – what happens if a PLWD consents to this technology and their capacity changes? Or what if they ordinarily have capacity but experience the odd bad day where they are not aware of the monitoring technology in their home?

“In delivering this kind of technology,” she says, “I think we also need to be careful they do not become tools of control for older people and people with disabilities.”

Further, James stresses that many conceptions of PLWD are rooted in incorrect assumptions regarding their capacity. Many PLWD can still provide consent and are capable of independent decision-making – and trouble deciding does not mean the decision should automatically be given away to someone else. For many PLWD, decision-making can be facilitated in the right conditions. Factors including their environment, stress level, the level and type of support available, language used (ex. plain language), and support from people they trust (namely, those who do not have their own agenda) can be addressed so as to support informed decision-making by the PLWD about their own life.

PRIVACY & DATA OWNERSHIP

The WDD example described above demonstrates the plethora of information contained within simple monitoring data. In simplest terms, we know whether or not the PLWD is safe and whether they were successfully guided back to bed. However, the data will also demonstrate when the person is in bed, in the hallway, in the washroom. It will demonstrate when they go to bed, when they wake up, how they move about their home, and how many nights they spend at home or away. While this data can be used to anticipate care needs and provide individually tailored care, it also raises a number of questions surrounding privacy and data collection.

James reminds us that we have a reasonable expectation to privacy within our own homes, and that technology which monitors us may have unanticipated implications in our most private moments. A heart monitor worn during sex, for example, could provide intimate information to family members that the older adult wishes to keep private.

Knoefel also describes a number of other ways in which Smart Home technology may pose inadvertent risks to the aging adult’s privacy and safety. One such risk is that of embarrassment. If the Smart Home Technology is visible and the aging adult is not proud of having it in their home, this may limit their social interactions and negatively impact their well-being. Similarly, the possibility exists that the audio cues provided by the Smart Home could startle or distress the adult.

Inherent to privacy concerns are risks associated with data collection and storage. Indeed, the very function of Smart Home technology is to collect information about the aging adult and transform it into useable data. But who gets to see this data? And what is the risk of a breach of that adult’s privacy?

Knoefel argues that the level of risk correlates to the role of the technology. Where video collection would be classified as high risk, that level of risk should be distinguished from the simple knowledge of whether, say, doors are open or closed.

Once the data about the aging adult exists, questions arise regarding data ownership. Here, Knoefel describes three levels of data: unidentifiable data, streaming data, and big data. The first refers again to a simple sensor that shows whether a door is open or closed. Data of this nature poses little in the way of security risks – we do not know what kind of door this is (cupboard, fridge, front door), nor do we know the address. The second refers to real-time knowledge combined with historical data. This more complex type of data will raise questions not required by the first: who controls access to the data? How is it monitored? What are the responsibilities of service providers? The third type of data brings together information from various sources into databases. Further questions naturally arise here, too: who owns the data? Where is it stored? And who gets to adjudicate questions of access?

Thus, as expressed by Wallace, Smart Home technology “[has] this huge potential to enable us to live in our homes as we age … there’s this huge potential of what we can do with it, both positive and negative.”

Moving Forward

Despite the rich discussion, the panel concluded with just as many new questions as those answered. Wallace identified three key areas demanding more attention as Smart Home technology finds itself in more homes across Canada.

First, how can we ensure the equitable distribution of “AgeTech”? If this technology proves to allow people to live at home for longer (and in a safer fashion), how do we ensure it is not only accessible to those living within the upper socioeconomic class, and/or those living in urban areas? Not only must the AgeTech itself be affordable, but so too must the Internet be affordable and accessible to all communities. Further, how can we ensure that aging adults and PLWD have sufficient digital literacy (and comfort) to use the Internet and the AgeTech – and especially how to use it while protecting their privacy and data interests. Given that fraud is the number one crime committed against aging Canadians – and that older adults are less likely to report being the victim of a crime than non-seniors – it is imperative that risks are both minimized and adequately explained to AgeTech users.

A second question begging future studies and conversations is that of cultural considerations. Where does AgeTech fit in within different cultural norms, and how can it be made appropriate for different families?

Finally, in moving forward, who will pay for AgeTech? If it is to be paid for by individual families, affordability will likely become a barrier and a point of inequity. If it is to be paid for by the province, access would hypothetically be more universal – but if it cannot be used without the Internet, should the province be paying for Internet access (at least for aging adults), too?

In future discussions and studies, James urges the inclusion of the voices of aging adults and/or PLWD to discover what kinds of technology they would find useful, interesting, or concerning. Because, she says, “older people are independent adults with the right to make choices about how they live.”

This event was co-sponsored by the University of Ottawa Centre for Law, Technology and Society, co-organized by Bruyère Research Institute, and funded by AMS Healthcare.