Emerging Technologies for Preventing the ‘New’ Dementia: Ambiguous Optimism in the Canadian Context

ABSTRACT

Experts’ views on the use of mostly digital technologies for dementia prevention are characterized by a simultaneity of “gerontechnological optimism” and skeptical hesitancy. Despite the hope for progress in dementia prevention through preventive technologies, experts also point to the complexity of prevention, the importance of environmental factors and public health policies, and the danger of an excessive focus on individual interventions. Without questioning the positive impact such technologies can have on many people, we claim that the experts’ ambiguity reveals a deeper concern, a kind of “cruel optimism” that is based on a fantasy of “supported autonomy”.

KEYWORDS:

• Ambiguity
• Canada
• dementia
• gerontechnologies
• optimism
• prevention

In 1907, Élie Metchnikoff (1907), the scientist who coined the word “gerontology,” published his famous oeuvre The Prolongation of Life, Optimistic Studies. And as Sir Peter Chalmers Mitchell observed in the foreword:

Modern science has already made vast strides towards the destruction of disease, and no one has more right to be listened to than (…) [Metchnikoff] when he asserts his confidence that rational hygiene and preventive measures will ultimately rid mankind of disease. The scientific investigation of old age shows that (…) its disabilities and miseries are for the most part due to preventable causes. (Mitchell 1907:vi)

While the idea of preventing diseases or the “miseries of old age” is a laudable goal, the optimism regarding scientific advancements found in Mitchell’s foreword is, of course, an extreme form, and most studies about combating aging-related decline provide a more tempered evaluation. While interviewing Canadian dementia experts about technologies conceived specifically for the emerging phenomenon of preventing conditions like Alzheimer’s disease, different nuances concerning the optimism around those technologies began to appear and became a central theme in our analysis. We term this phenomenon “gerontechnological optimism” and define it as a positive stance (and its emotional correlates like certainty, ambivalence, enthusiasm, and hope) toward technologies with the objective of combating or relativizing finitude and the decline of aging bodies.¹ It should be noted that Metchnikoff’s optimism, as well as the optimism expressed by our interviewees, is paradoxically at least partly built on a deep pessimism prevalent in many cultural contexts: the idea of prevention targets aging individuals who, ideally should not become sick, a form of ageism that conceives of seniors as a burden in societies with scarce care resources. Prevention is also motivated by aging individuals’ own pessimism, fears of becoming “demented”, of getting robbed of autonomy and personhood. The aim of our analysis of expert interviews through the lens of optimism is not only to reveal that experts believe in the effectiveness of preventive technologies for dementia. Because all respondents relativized their optimism – at least partially – as the interviews unfolded, we are especially interested in how convictions and doubts are articulated, sustained and, in this way, become more ambiguous. The co-existence of different kinds of evaluatory logics within one person can be described as conscientization, a process of becoming aware (Freire 1970). While this is certainly true – some thoughts were triggered by our questions – a less linear conceptualization conceives of certainties and doubts as co-existent and evolving; as context-dependent framing. Høyer and Ross Winthereit (2022) call this “co-existing narratives”, while Leibing et al. (2016) use the term “multiverse” for capturing such synchronicities (also Niewöhner et al. 2011). In fact, George Orwell, in his famous novel 1984, uses a similar term: he adopts “doublethink” to describe the co-existence of two contradictory arguments accepted as true within people.

Technologies with the aim of preventing aging-related decline have become increasingly popular over the last three decades, especially digital tools of self-tracking and surveillance (Katz and Marshall 2018; Lupton 2016), but dementia prevention involves a particular set of challenges. Not only do such technologies quantify the aging body, as Katz and Marshall argue, they also underscore, in the case of dementia, the embodiment of the brain. In recent years, theories about the dementia syndrome have gone through important epistemological changes; dementia has come to be seen as more preventable, and a less brain-centered conceptualization has emerged (Leibing 2018; Leibing and Kampf 2013). Until recently, “brain training” – a longstanding notion (Katz 2014) – as well as related technologies for achieving “brain fitness” (though usually bringing rather modest results; cf. Simons et al. 2016) was a common though uncertain measure many aging individuals were encouraged to adopt to maintain cognitive functioning. In recent years, however, this has changed: especially after two widely disseminated Lancet Reports (Livingston et al. 2017, 2020), there are now understood to be 12 modifiable risk factors (and possibly others – for instance, sleeping problems and dental health, that are not part of the “big 12”) when discussing dementia prevention. This resulted in the perhaps optimistic claim that 40% of dementia cases could be prevented when the following risk factors were controlled over the life course: early life education; then, in midlife: hearing loss, traumatic brain injury, hypertension, alcohol abuse, obesity; and in later life: smoking, depression, physical inactivity, social isolation, air pollution, and diabetes. Consequently, cognition is no longer seen as the only determining element defining dementia; “brainhood” (cf. Vidal and Ortega 2017) has, to a certain extent, been transcended.² As a result of this reconceptualization of dementia as more preventable, ideas around concrete interventions have become more optimistic (Ojakäär and Koychev 2021). Many of the new modifiable risk factors can be managed in concrete ways, either through pharmacological or lifestyle interventions. Consequently, we became interested in how a relatively radical – and optimistic – new idea about prevention gets entangled with technological developments.

In this study, we want to look at tech devices that broadly target the 12 modifiable risk factors identified in the 2020 Lancet Report as well as the “technologies of self” related to them. Theoretically, any prosthetic technology of prevention could be included in this study: for instance, wheelchairs, used when meeting people (risk factor “social isolation”); dental floss which reduces inflammation of the gums, one possible risk associated with dementia; psychotherapy or pills for fighting depression as a risk factor, and many others. However, our focus is more restricted: when asked about preventive technologies, the 26 experts we interviewed so far mentioned exclusively those tools that were developed for early detection of changes in preclinical states of a possible dementia, sleeping aids, apps and robots fighting social isolation, and especially different kinds of apps for behavioral (lifestyle) changes such as physical activity and nutrition. In terms of post-diagnostic tertiary prevention (combating further decline), tele robotics and smart home technologies were also mentioned (see Table 1; also Astell et al. 2019). The preventive technologies for dementia discussed in this article are therefore conceived traditionally. They are relatively high-tech interventions, mostly in the form of apps, not low-tech everyday tools (like dental floss) (cf. Bruun et al. 2022) within the wide range of existing assistive technologies for older people (cf. Schicktanz and Schweda 2021). Nevertheless, the objective of some of these tools is precisely to ensure they become a part of everyday life, for instance by “turning training into play” (Aarhus et al. 2011). It is important to add that several of these technologies for dementia prevention existed before now – for instance fitness trackers or wearable heart rate monitors – and are being repurposed for dementia prevention, either by using the same technology or by refurbishing the design. This raises the question whether the tool remains the same or whether its new purpose redefines its materiality and social life. The longstanding preventive history of some risk factor-related technologies (e.g., monitoring poor nutrition to help prevent obesity, now understood to be a risk factor for dementia) further explains, at least in part, the optimism in the form of certainty expressed by many of the interviewees in our study.

Table 1. Experts involved in developing preventive technologies for dementia, their tools and targeted risk factors.

	Can CanTech 1	Can CanTech 2	Can CanTech 3	Ca CanTech 4	Can CanTech 5	Can CanTech 6	CanTech 7
Tools	Online tool for personalized dementia risk prediction	App for changing lifestyle + personal counseling	Tele Robotics in care settings	Smart home technologies; AI and digital monitoring	Tech supporting lifestyle changes/ Brain health assessment tool	Nutrition App/Technologies to support people in daily life	Brain health assessment tool
Targeted risk factors	Informing users of their “biggest” modifiable risk factors, targeting current and future risk factors that one can act upon. Examples: current and future smoking, physical activity, diet, social isolation, depression and mental health, education level, chronic health conditions.	Targets modifiable risk factors to encourage lifestyle changes in three categories: physical activity, healthy eating, and intellectual stimulation.	The telepresence robot targets risk factors related to social activity, loneliness, and social isolation.	Smart home technologies act as a predictive tool for changes in one’s health and behavior. The AI technology identifies patterns in cognitive behavior and physical activities, monitoring daily living activities.	Focus on modifiable risk factors for dementia, including lifestyle risk factors (exercise, diet, loneliness, and social isolation) and health factors (stress, cardiovascular health). Technologies aim to modify lifestyle risk behaviors.	The nutrition app targets diet and healthy eating, monitoring, and keeping track of one’s eating habits. The app also supports cognitive and physical engagement.	Their Smart Tracker Tool monitors one’s overall wellness and health, targeting modifiable risk factors such as physical activity, diet, and social isolation. The tool also monitors sleep as a risk factor for dementia.

Prevention has a special meaning in Canada, a point that will be important for our central argument. In 1974 the then Canadian Minister of National Health and Welfare, Marc Lalonde, published a report entitled “A new perspective on the health of Canadians.” This publication provided the basis for the influential 1986 “Ottawa Charter” in which the concept of “health promotion” was defined and in which a special focus on health inequalities became prominent. Lalonde’s ideas further influenced the 1978 WHO Alma Ata Conference “Health for All” that promoted a focus on primary health care, as well as several other core public health policies worldwide (see Tulchinsky 2018). It was also Lalonde and his colleague, DG Bert Laframboise who, probably for the first time, put a major emphasis on the importance of lifestyle as a central element in health promotion (Mayes 2015: chapter 3), with the result that the personal responsibility of the citizen came to the fore (Foth 2021; McKay 2000). At the same time, prevention among Canada’s public health scholars is generally conceptualized as oriented toward community and other environmental factors. Canada has in the past even been called the “world’s Mecca for health promotion” (Rutty and Sullivan 2010:8.21). However, although prevention is theoretically a priority in the country (cf. Public Health Agency of Canada 2018), the lack of funding for prevention compared to acute care in a hospital-centered health care system has been underscored by many experts over the years (e.g., Strang et al. 2017; Réjean Hébert, personal communication). As Crawford (2021) argues, Canada under the current Liberal government can be situated in a “progressive neoliberalism,” that exists within the paradox of mostly free health care for all and a strong reliance on community values and social inclusion, but at the same time, the maintaining of several measures implemented by the previous Conservative Harper government with its pro-market ideology.² It is the concomitant ideology of the individual sustained by community, in the case of aging individuals especially, through promised home-care for seniors, that will become an important element in our concluding analysis.

Optimism

It is no surprise that an optimistic outlook is an important consideration when individuals who are directly implicated in the development of certain technologies are interviewed – a recurrent topic in the literature (e.g., Hochschild and Sen 2015). Especially in the wider field of Science and Technology Studies (STS), hope and hype – tightly linked to optimism – regarding technologies and their promissory rhetoric have received quite a lot of attention (e.g, Borup et al. 2006; Leibing and Tournay 2010). At the same time, and just as it happened in our research, several studies have shown how optimistic narratives get relativized and assessments reshaped once promises are embedded in lived experience, for instance in a patient group (Leibing 2009a), in clinical practice (May et al. 2001), and in “Big Data” (Stevens et al. 2022).

The German philosopher Gottfried Wilhelm Leibniz (1646–1716) is often quoted in scholarly work on optimism, and his idea that this world is the “best of all possible worlds.” Like Sir Peter Chalmers Mitchell quoted above, Leibniz believed that it is progress in science that would contribute to creating a better world by eventually achieving a true understanding of ultimate, God-given truths, but that also the actual world needs to be seen as perfect since it is God who created it (Bennett 2011). Optimism and its positive stance toward the present and the future is often judged as naivete – Leibniz was mocked by Voltaire in this regard. Indeed, optimists are sometimes criticized for selectively focusing on positive ideas, as for example with those promoting positive thinking approaches in psychology (“Smile or Die”; Ehrenreich 2010). Optimists are also accused of complicity with certain ideologies and commercial interests, when negative information is, deliberately or not, neglected, resulting in silences or false promises which can prove dangerous, as in some cases of evidence-making by “Big Pharma” (e.g., Healy 2022). However, optimism is more than a sentiment, a psychological state of an individual or group. As Bennett has shown, optimism to a certain extent holds the world together; without optimism, projects would not advance; the world would stand still. In this sense, optimism is a “motor” of change or what Hacking (2006) called a “vector” and Jutel (2011) a “social engine”. The salient point when studying optimism is that it “performs significant psychological, social and cultural functions” (Bennett 2011:301). It is therefore important to add that the attribution of optimism to a phenomenon (and to our interviewees’ initial perspectives on technologies) does not necessarily mean that they are wrong; their positive stance may well be sustained by rigorous methods and “hard facts”. What is at stake is the “world-making” power of such a positive position, the images of a good life it is derived from, and what kind of certainties (and doubts) sustain degrees of optimism over time (see also Pink 2023).

In fact, a number of similar concepts based on future-making emotions have been used by authors in the field of STS and related disciplines, including: expectations (e.g., Brown 2003), hope (e.g., Leibing and Tournay 2010), anticipation (Adams et al. 2009), ambivalence (e.g. Franklin 2013), and innovation (e.g., Nowotny 2006). Sub-fields like an anthropology of hope (e.g., Miyazaki 2004), an anthropology of uncertainty (Leibing 2009b; Leibing et al. 2016), and a sociology of expectations (e.g., Borup et al. 2006; Brown and Michael 2003) all examine how a certain stance toward the future (hope, hype, uncertainty etc.) shapes the emergence and social life of technologies. Without being able here to enter into the many existing debates and contributions to the wider field, there is a reason why we chose “optimism” as a guiding framework.

Of all the future-making notions described above, optimism is the one that is most anchored in the present, even though any positive outcome is by definition located in the future. As in the aforementioned trust in God, there is a certain taken-for-grantedness that is at stake (that can be based on scientific rigor and evidence-based reasoning), a kind of at least momentary Urvertrauen that some describe negatively as naiveté. However, a state of optimism can easily crack and certainties might then be questioned, especially through others perceiving optimism in a particular circumstance as unwarranted or, as in our interviews, through people rethinking their own certainties.

In this sense, technological optimism can be conceived of as an unquestioned sense of the inherent goodness of the technological. An example can be drawn from Oldenburg et al. (2015:485) who describe the advantages of preventive technologies in the form of apps. According to these authors, preventive technologies

… reach large numbers of individuals and populations at relatively low cost; (…) address multiple key functions of effective health behavior change programs simultaneously, (…), with high fidelity (…); and (…) generate large amounts of data that can be used (…) to guide dynamic, adaptive, more effective, and sustainable programs.

The opposite – techno-pessimism – can be found, for instance, in parts of the caring professions, especially those who see technologies as threatening “the human touch” (Lim-Saco 2019; but see; Pols 2012). However, optimism and pessimism are rarely absolute. Many scholars, especially in the wider field of STS offer a different perspective. Timmermans and Kaufman (2020), in this regard argue that the same health technology can improve the lives of some but harm others. Technological changes come, as they argue, with “social sorting and patterning” (584) or, as Brown and Webster (2004) argue, such technologies are “reordering lives.”

Technologies for dementia prevention fit neatly into the common argument of optimization and empowerment and, as many before us have argued, appeal to neoliberal ideals of activity and self-responsibility when caring for one’s health (e.g., Aronowitz 2009; Foth 2021; Rose 2007; but see; Bell and Green 2016). However, such general arguments need to be seen in particular contexts; gerontechnological optimism related to dementia prevention is embedded in local assemblages. By focusing on interviews with Canadian experts, we will only be able to carve out one part of such an assemblage. While the first part of this article is a more descriptive discussion of factors on which gerontechnological optimism is based, what we ultimately want to show (discussed in the second part), is that the ambiguities found in gerontechnological optimism reflect important values and fantasies regarding ways of living as we age.

Methodology

Gerontechnological optimism discussed in this article is mainly based on 26 expert interviews undertaken in different Canadian cities by the first two authors (via Zoom). They are part of the first phase of a three-country-study (Canada, Germany, and Switzerland) on recent changes in dementia prevention (see Leibing and Schicktanz 2021). We use a conjointly developed semi-structured explorative interview guide thematizing the experts’ role in the wider field of dementia prevention.

Categories of experts as interviewees were pre-determined for all countries, although ultimately none of our interviewees could be made part of only one category:

• Directly involved in the development of technologies (n = 7);

• Researchers in the wider field of dementia prevention (n = 5);

• Advocates for dementia prevention (n = 5);

• Researchers and advocates who have worked with minority groups (n = 3);

• Individuals involved in health politics (n = 4);

• Ethicists in the neurosciences (n = 2).

Many of the interviewees are also implicated in direct health care. In the following, we will mainly focus on the seven experts directly involved in the development of preventive technologies for dementia.

The interviews lasted between 40 and 90 minutes and were transcribed verbatim. Anonymized interviews were, first of all, analyzed in their integrity through discussions within the Canadian team, in which the most important themes were extracted, which served for additional discussions and the finetuning of themes. Interviews were further coded with the help of Atlas.ti (version 22.2.0) and then made available to the other two national teams. This article relies only on the Canadian data.

As a pre-study to this project, the first author conducted, for one year, an ethnography within the Quebec health system, with a focus on a provincial assessment tool measuring the needs of support for individuals experiencing loss of autonomy. Observations of its application, interviews with frontline practitioners, analysis of 20 anonymized patient files, and participant observation in training sessions for health professionals regarding the use of the assessment tool were the privileged methods here.

Gerontechnological optimism

The interviewees implicated in tech development are convinced that preventive technologies can lower the risk for dementia. Researchers told us, for instance, that “I have seen research and even our own research has shown a slowing down of the progression of dementia using technologies” (CanTech 4). CanTech 5 declared that “I am a big believer [in these technologies]; (…) I think living a good life in that sense [lifestyle changes triggered by apps] is low cost;” and then added, after a moment: “I take that back. For certain populations, it’s a low-cost and easier thing to do.” Many of the enthusiastic arguments are based on a logic of existing knowledge: most of the newly identified modifiable risk factors for dementia have a long history of prevention efforts as the targets of major public health campaigns in the past, but for diseases that before were mostly unrelated to brain health (e.g., diabetes, obesity). The connection to brain health, however, has been made by recent authoritative texts like the aforementioned Lancet Reports (see Leibing 2018, 2020; Keuck 2021 for a historical analysis), so that now the underlying link from prevention to risk reduction is generally taken for granted. It should be noted that many of these risk factors were previously already related to vascular dementia and only more recently, increasingly to the dominant form of dementia, Alzheimer’s disease, embedding the new preventive measures in an already existing logic of risk (see Leibing 2020; Leibing and Schicktanz 2021 for a more detailed analysis).

A great number of interviewees were aware that prevention of dementia has a strong historical component. For instance, CanTech 4 describes an emerging optimism, compared to the gloomy perspectives of previous dementia research:

In the past ten years, I’ve seen a lot more research than ever around lifestyle choices and lifestyle changes that can help prevent dementia. [Before] (…) a lot of people almost kind of wrote this group off and (…) said, well, what’s (…) the point? (…) They have it. It’s going to progress, (…), and that’s it. Like, why are you really wasting your time on this population? So that’s definitely a big change.

One reason, though not the only one, for this “preventive turn” is the lack of success of numerous pharmaceutical interventions which since 1993, when the first specific dementia medication (Tacrine) arrived on the market, resulted first in hope but later in disappointment due to their limited effect on cognition or activities of daily living (Casey et al. 2010; Leibing 2009b). This was referred to by some of our interviewees, for instance by CanTech 5:

I have seen (…) a greater emphasis in the research community on prevention, (…) because treatment has been challenging, (…). I feel like that [before it] was more focused on drug discovery and sort of like a silver bullet kind of approach, whereas now we’re recognizing that dementia prevention is multifactorial, that it can be a combination of genetics, environment, and lifestyle behaviour.

The complexity of dementia prevention, however, gets bracketed, since the preventive technologies examined here generally target only one or two risk factors (you might have a fitness app, a diet app etc.) for which evidence is often easier to generate. Therefore, optimism is sustained by the certainty of doing good research, as defined in contemporary biosciences. The limitations of including complex phenomena into evidence-based models has been discussed intensively and will not be repeated here (see Stevens 2018 for an overview). As an example, CanTech 2 reveals their rigorous research methodology:

We used validated scales, and then according to the literature, show, for example, that changing so many points on such and such a scale was associated with a reduction of, say, 15%, 20% of the risk at the population level. (…) We said to ourselves: “If we are able to have a change in 50% of our participants, it means that there is a signal.” So, we can continue and go to the next step in the validation phase.

A control of only some risk factors is better than nothing, one could argue. However, the question remains if engaging with all risk factors and its concomitant surveillance of the self would even be possible in terms of self-discipline and living a good life (cf. Leanza 2021) and if one or a combination of different apps could deliver such an ideal. Further, the fact that most risk factors are based on access to a well-functioning health and social system (Leibing and Schicktanz 2021) further shows that the individual who is in the middle of these preventive technologies still only has a limited influence on dementia prevention.³

Another factor on which optimism is built is a given tool’s success, which provides certainty about being on the right track regarding an urgent public health need. CanTech 1, for instance, observes: “the [risk] calculator has been used – I think it’s reaching a million times by a million different people since it was launched last June, I believe it was, so just about a year. It’s been used in over 200 countries. And we had a lot of media uptake in the beginning.” The fact that dementia prevention merges with longstanding recommendations for active, healthy, and successful aging – “a contemporary obsession,” as Sarah Lamb (2017) observes – further explains a related tool’s success – the novelty of the link between certain risk factors and brain health merge with existing common knowledge. Optimism is based on the certainties described, but it is also processual and unstable. Especially in the beginning, tech developments provide valuable insights into the making of optimism, in which chance and opportunity play equal roles.

The materialization of optimistic technologies

Technological optimism is not unidirectional, toward a given technology, from hopeful humans to objects and tools. What happens instead is a co-construction in which technologies trigger optimism in developers, aging users, funding agencies, policy makers and others, who then in turn shape technological possibilities and models. The following narrative about the birth of a tool for improving nutritional intake in aging individuals provides an example:

I had already been working on technology with people with dementia, and I knew they could use touch screens. (…) But I also thought, okay, so I’m a psychologist. We’ve got the nutritionist, we’ve got the engineer, we’ve got the computer scientists [in our team]. What I’m interested in is the factors that go together with people not eating properly. So, it could be health reasons, it could be physical reasons (…), people’s teeth don’t fit, or they’re taking medication that makes their saliva dry up. (…). And then also the cognitive impairment, right? (…) It wasn’t just like we said, let’s make an app. (…) We did a huge amount of work developing all these measures. (CanTech 6)

This account was based on existing knowledge about factors contributing to patients not eating well, previous experience with older people (using tablets), but also because some factors going into building the app could be tested in a way that was approved in contemporary science: “ … the mood and the cognition were all validated against gold standard measures.” (CanTech 6). Over time, the tool was picked up and adapted again, this time finetuned to the needs of special groups. This adaptability provided additional certainty to its designers that they were doing the right thing, especially when older people confirmed its usefulness and likability:

Over the years, people were very interested and were sort of saying, this would be so useful for different populations, you know, people with diabetes, for instance, (…) people who are obese (…). And then also, people saw potential for people with dementia or people with precipitous cognitive impairment. And we tried it. We took it to an adult day program (…). And people could use it and they were interested. (CanTech 6)

And once again, more funding further transformed the tool, this time with the objective of turning it into a tool specifically for dementia prevention:

I already had the name. Sounds silly. But then when there was a funding opportunity and one of the priorities was around dementia, (…) it seemed to me that if people were using this sort of app regularly, and there was a potential to keep track and spot if there’s a change, this could actually deliver that type of early detection of something’s going wrong. (…)So, it looks slightly different to [original tool], which was also co-designed with older people. (CanTech 6)

Another app origin story was told by CanTech 2, showing a similar pattern of an initial idea, an existing tool, encounters with significant knowledge carriers, and, to a certain extent, an initial trial and error approach, sustained by scientific rigor, leading to a refining of the tool over time.

So, in 2014, my [relative] was very much affected by Alzheimer’s disease. (…). Her husband [a businessman and philanthropist] read at that time about the FINGER study [an important Finnish prevention study]⁴ (…). And at that time smart phones were becoming more and more popular – and so he said: “Well, that tool there [phone] can put a personal trainer into the pocket of every Canadian.” (…) In 2018, we analyzed it with AI and still, it was still not propitious, (…). And at that moment I met A. [researcher in neurosciences] and we built this company. (…) You see it’s a family history [the tool was named after the relative with dementia described above].

A. (the second CanTech 2 respondent) adds: “It was only the two of us. (…) And we looked for someone from technologies and we eventually found him. We further advanced the project, slowly we became 3 then 4. (…) And then we found someone who was really a good fit. She had worked in [another country] for a project that was like FINGER, but a digital version.”

For most interviewees, the preventive tool’s role was specially to make behavioral changes more attractive, as making these changes is something few people without such a tool are inclined to do. So the personalization of prevention played an important role for many – designing tools tailored to individual needs and not to an anonymous mass. CanTech 1, a researcher specialized in public health, developed an online tool for personalized dementia risk prediction. She notes, “ … we believe that one of the big things in helping to prevent dementia is knowing what’s your risk of dementia” and continues, “It’s very personalized. (…) We can say, you know, your risk of getting dementia in the next five years is 5%. That is higher than the average male of your age.”

Besides knowing one’s specific level of risk, personalization means that a tool should match up with a user’s socioeconomic background. CanTech 4, in this regard observes that, “because obviously when we try to educate people on these different types of interventions, we need to consider their educational level as well and ensure that we are disseminating the information at a level that’s understandable by everyone, no matter what their level of education is, cultural, background, language, et cetera.”

While knowing one’s level of risk for dementia is seen as a precondition for the desire to change risk-related behaviors (although a number of studies have questioned such a direct link; e.g., Cook and Bellis 2001), these tools are meant to teach the individual to educate herself. In fact, Bert Laframboise who played such an important role in the Canadian history of public health, put a great emphasis on educating Canadians, for which he relied on the everyday technology of television: “[S]ocial marketing was promoted [by Laframboise] as a new hope that could change the self-destructive health habits of Canadians,” observed McKay (2017:9). Instead of the television, it is now the app that educates its users, sometimes in a Pavlovian way. CanTech 5, for instance, argues that the core of preventive tool design is comparable to video games – there called “gamification” – conceived of as a rewarding technology. They are built, “ … around motivating positive lifestyle behaviors, so incentivizing changes in exercise or better diet habits. And so (…) if I set this goal and I reach that goal, I get, I don’t know, ten points on something, and if I get enough points, I get a Starbucks card or something like that.”

Another example for a rewarding technology is given by CanTech 5 who refers to stress as a possible risk factor for dementia:

So, it’s an EEG headband with accompanying smartphone app. (…) [i]f the quality of your meditation is good as determined by your EEG signal, then the app gives you positive feedback in the form of soothing sounds like beach waves or birds chirping. But if the quality of your meditation is poor, then it will play you harsh sounds, like thunder or storm sounds. (…) Hopefully the neural feedback will enhance the quality of your meditation and your mindfulness. (…) Now, whether or not that’s directly preventative, I think that’s still under exploration.

Here, as in the previous quote from CanTech 5, when specifying that tech solutions are not low cost for everybody, the optimistic argument becomes increasingly uncertain as the interview unfolds. In fact, quite frequently, arguments initially made that were based on a logic of simplification (related to established knowledge of risks) – inherent and even necessary in science (cf. Bowker and Leigh Star 2000) – were later rethought or relativized.

Relativizing certainties

Many interviews we conducted included some kind of turning point, when previously optimistic evaluations began to be at least partially called into question by the interviewee. Doubts were sometimes triggered when abstracting from a focus on the single tool under consideration and thinking about general trends in dementia prevention. CanTech 1, who had developed an online personalized risk prediction tool, initially declared:

There’s a whole bunch of science in the background in order to make these numbers reliable. All of this was built on the Canadian Community Health Survey data (…). And so a lot of that is where our credibility comes from (…) And so we are pretty confident in our general values.

Later on, however, CanTech 1 expresses significant concerns regarding early dementia detection and points out the danger of overdiagnosing people when prompted to discuss developments in dementia prevention. She refers to the difficulties in assessing the impact of different preventive interventions in which risk factors are treated in isolation:

I think one thing to be careful of is how we’re assessing it (…). So maybe you come out and say that it reduces or slows decline by this much. How are we going to be assessing that perhaps in comparison to physical activity increase? It’s really hard to compare these things because of all these upstream factors and just coming at it from the different levels of prevention.

This researcher, like some others, further problematizes a strong focus on individual prevention and highlights the responsibility of governments: “…we really need to be careful about how we come at this and not just blame people [but] recognize that it’s not just about preventing dementia but creating dementia-inclusive communities and helping support people and providing a more accepting society.”

Other experts involved in the development of digital technologies express concerns about the lack of evidence for behavioral prevention and focus attention on the limits of these technologies. CanTech 6, working on nutrition and lifestyle apps, reflects on the uncertainty surrounding the actual impact of individual measures:

I mean, my advice [to older people] is always sort of – keep doing things. I also think we don’t have the evidence (…) We don’t know what the trigger event is that starts the neurodegeneration. So I think it’s a really difficult challenge to know if things we’re doing are having an impact. (…) And I’m very, very concerned about a lot of the advertising that is preying on people’s fears, you know, people’s vulnerabilities, (…). I’m not sure that we’re in a position as yet to say this will be helpful, whether it’s dietary, whether it’s like I said, cognitive exercises.

Somehow the immense amount of time and huge costs that are needed to develop a tool became problematic when interviewees started to think about the uncertainties in terms of real impacts on aging individuals. The interviewees’ emerging insights further lead to the question of whether the newer focus on dementia prevention isn’t likely to reduce important funding of much-needed care for those individuals with dementia about whom there exists much less optimism (and maybe stigma for those judged not to have done enough for themselves in the way of prevention) – an argument that several scholars are concerned about (e.g., Georg and Whitehouse 2021). These concerns, however, could be relativized when relying on the common rhetoric of catastrophic demographic transition: the following comment by CanTech 2 includes the doubt that a certain tool might not have exactly the desired effect, but since the growing number of individuals with dementia contribute significantly to raising costs in health care systems, any impact, however small, will help.

Our objective would be to convince the government to invest in solutions like [tool name], (…), because we think that the tax burden, the societal and emotional burden for people, will be so great in the coming years that, even if we reduce it [dementia] by 10%, 20%, 30%, it will have a substantial impact.

Like CanTech 6, several interviewees became much more skeptical regarding the message drawn from the Lancet Report, claiming that 40% of dementia cases are preventable. They agreed that little is known about the interaction of risk factors (see Peters et al. 2019) and the validity of targeting only a limited number of risk factors, as is often the case with preventive technologies.

Dementia prevention (…) can be a combination of genetics, environment, and lifestyle behavior. And so we have to approach dementia prevention much more holistically, (…) dementia prevention in and of itself is not a monolith. I think we have to recognize that there’s so many different factors to it. (CanTech 6)

Finally, a major doubt emerged regarding assessing the long-term effects of preventive technologies, effects that last beyond the user’s initial enthusiasm, a problem which is well known from adherence studies (e.g., Wahlberg 2022). CanTech 1 expresses this doubt: “You know, we have a campaign and then one year later, maybe we don’t see an effect, but long-term, maybe we’re having an effect. But that’s a really big problem: that it’s really hard to assess these things.”

These quotes show that although in Canada community approaches and health equity are important values that were mentioned by all interviewees, preventive tools nevertheless target the responsible individual. We do not wish to repeat here the often-made arguments regarding neoliberal values as shaping health promotion (e.g., Ayo 2012, Lhussier and Carr 2008), although such a perspective should not be neglected. Rather, we provide in conclusion a perspective in which ambiguity regarding preventive technologies can be seen as resulting from the unfulfilled promise of a good life in old age, of which the “fit” aging body is part. The promise, what we call “supported autonomy,” is well illustrated in the following quote by the Government of Canada (2022; emphasis added) and that is also part of the government’s already mentioned often-promised improvement in home care for older people’s growing needs: “After a lifetime of hard work, seniors want to live healthy, safe, and independent lives. Many seniors want to stay at home. (…), in communities that support them. The Government of Canada is committed to ensuring the Canadian seniors have all the supportive care they need.”

Discussion: Ambiguous optimism

So far, we have provided elements that sustain both optimistic stances as well as skepticism regarding technologies for dementia prevention. One could easily conclude now that, because there are so many doubts regarding statistical evidence, complexity and the interaction of risk factors, individual versus State responsibilities, and adherence to preventive programs – such technologies should be discarded, since their aim, dementia prevention, seems to be merely a fragile construct. In fact, even Livingston, first author of the two Lancet Reports that claimed that one third of dementia cases could be prevented, writes that:

… evidence from large clinical trials is not conclusive to support that a third of dementia cases might be prevented (1) (…) Our current understanding of the relationship between cognition and dementia pathology is incomplete with a lack of knowledge about temporality and sequence among lifestyle risk factors, appearance of disease specific pathology, and the development of clinical symptoms. (Montero-Odasso et al. 2020:3)

However, the ambiguous optimism described in this article might provide a different perspective on technologies and dementia prevention. Inspired by Lauren Berlant’s “cruel optimism” (Berlant 2011), ambiguity can be seen as a sign of discomfort and as such making way for the possibility of change, while optimism, within such a logic, can be conceived as a form of attachment and desire. In contrast to most texts on gerontechnologies that rightly criticize a rhetoric based on a catastrophic future – the threat of aging as decline and seniors causing exorbitant costs to health and social systems – for which technologies are supposed to provide a solution (e.g., Neven and Peine 2017; Peine and Neven 2019), we are actually arguing that a too positive future lies at the heart of the problem of preventive measures. Explained in a simplified way, Berlant’s book is about the vision of a good life to which individuals, but also communities and States themselves (in the form of policies and laws), are strongly attached. However, institutions that once sustained a form of good life have crumbled over time, while the attachment to such a life, that has become a form of fantasy, persists. Desiring this specific form of life then can work against a person’s own interests, even while she – as well as States – takes no notice of the dilemma, since crisis has become ordinary (“crisis ordinariness,” after Berlant, p. 10). From such a perspective, it is the attachment to a fantasy of old age in which frailty and decline can be postponed or slowed down – with the help of preventive technologies, among other measures – and in which our status as independent, autonomous individuals will be preserved over time. Further – at least in Canada, with its strong rhetoric of community health and social inclusion – such a fantasy, as in the quote by the Canadian government (2022) above, relies on the promise of institutions that can sustain individuals with declining health and take care of their prosthetic needs. This “supported autonomy” has increasingly become a privilege as opposed to a right, even in a country like Canada (Wankah Nji et al. 2018).

The fantasy of supported autonomy has been reinforced, over the years, especially by promises of investments in home care (Gilmour 2018). This discrepancy between values mirroring the ideal of supported autonomy and the reality became especially clear when the first author of this article participated in two training sessions for frontline practitioners with the aim to initiate them into the use of the provincial assessment tool (“Multiclientele Assessment Tool”), measuring care needs for aging individuals experiencing loss of autonomy. The tool was developed “holistically,” and covers many dimensions: physical health, lifestyle, autonomy measures (activities of daily living, mobility, communication, mental health), as well as the psychosocial situation, economic background, and the physical environment.

During the training session and in subsequent interviews, the frustration of frontline practitioners mirrored the incongruity between final scores and resulting recommendations for care, and the actual care evaluated individuals finally received. Many stated that they did not know why they were obliged to conduct long evaluation sessions, knowing that the tested person would rarely receive the care the testing tool was conceived to recommend on multiple dimensions (see Gilbert 2019 for a detailed study on the tool). Many confessed to only asking certain questions, privileging those about physical health, and even to changing some scores for enhancing needs.

The assessment tool was conceived based on a fantasy of a good life in old age, in which older adults are supported holistically, not only in their physical needs. This kind of gap that exists between the conceptualization of a good life and the lack of institutions providing support is also apparent in the discussion about the preventive tools for dementia our interviewees talked about. Due to limited space only one example will be discussed, stemming from our interview with CanTech 2 who told us, with a lot of enthusiasm, that they had an adherence of 90% for their tool (although participants who showed hesitancy at the beginning of the study were excluded). Knowing that individuals’ adherence to behavioral changes can be improved by personalized reinforcement, they hired counselors who coached participants and reaffirmed their desire to lead a healthier life:

There is the fact that they had a meeting with the counselor. And like that, over time a real relationship between participant and counselor gets established. That really helps with the adherence. And the many reminders they get; (…) like if they don’t participate for a while: “your counselor is there for you!”

This kind of perspective shows the tension that exists between the logic of developing such technologies (in a lab) and its real world applicability. Clinical trials generally happen in artificial constellations due to the ideal conditions in labs but also financially, at least in richer countries, through funding. Since the tool, an app, exists for research participants, but also in “real life” – it can be downloaded from their site – CanTech 2 explains that personalized counseling, an expensive extended part of the technology, is only available for participants in their research group. However, there is a less intense form of counseling available for everybody, and this is because the public version of the tool is also well funded; it is part of a philanthropic project. The “aspirational anchor” (Berlant 2011:3) of holism that the tool embodies, could not exist by itself in the provincial, mundane reality of limited resources. Funded tools generally exist within a limited state of ideal conditions since funding is restricted to a certain time frame and the question of subsequent funding – especially for measuring risk reduction, which requires longitudinal studies – is rarely debated. Or, right from the start, technologies are developed to be commercialized, a trend increasing in many countries, contradicting the “holistic” discourse of our interviewees, with its philanthropic undertone (e.g., Rasmussen 2008).

It makes no sense to frame the optimism of preventive technologies as an illusion, nor supported autonomy as fake. On the contrary, once ambiguity becomes discrepancy – the realization that there is a gap between desire and support – this creates spaces Berlant calls “impasses”– spaces of reflectivity. In this sense, gerontechnological optimism here is a social vector that not only makes technological advancements happen; it first of all leads ideally to a reflection on alternative spaces, alternative models of supported autonomy for people in need. As long as supported autonomy remains a fantasy, the lack of institutions can be repeatedly remarked upon, but the situation will continue to exist – veiled and stuck in an unfulfilled desire. Preventive gerontechnologies ultimately incorporate difficult promises, but also the chance to engage with such promises once the cruel part of prevention is acknowledged; a first step is often the recognition of an emerging of ambiguity.

Acknowledgments

We are grateful to the Hanse-Wissenschaftskolleg (HWK) that hosted and co-financed the international symposium “Preventia - Optimizing Bios through Technologies” (18-20 October 2022) in Delmenhorst, Germany.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This research is funded by the European ERA-NET NEURON initiative; the Canadian part of the project is financed by the Canadian Institute of Health Research (CIHR) and the Fonds de recherche du Québec - Santé (FRQS) [Project #026-BEAD]. Ethics approval was given by the University of Montreal CERSES (Comité d’éthique de la recherche en sciences et en santé), [CF00147616 and CF00147827].

Notes on contributors

Annette Leibing

Annette Leibing is a medical anthropologist and full professor at Université de Montréal. Her research focuses on topics related to aging, by studying – as an anthropologist - Alzheimer’s and Parkinson’s disease, aging and psychiatry, pharmaceuticals, stem cells, elder care, prevention and risk factors as a ‘problem’ and, more recently, cultural manifestations of resisting the future. An important part of her research takes place in Brazil.

Cynthia Lazzaroni

Cynthia Lazzaroni is a Ph.D. student in Anthropology and Social Studies of Medicine at McGill University. Her research interests concern how challenging the disease model of dementia can rethink cognition away from a focus on decline, reflecting on the possibilities of experience and becoming through and beyond loss. She engages with phenomenology, philosophy, affect theory, memory and chronicity, and the anthropology of images.

Niklas Petersen

Niklas Petersen (M.A.) is a research associate at the Department of Medical Ethics and History of Medicine, University Medical Center Göttingen, and PhD student at the Faculty of Social Science, University of Göttingen. His research interests include dementia care, medical sociology, and qualitative methodologies.

Notes

1. For an overview and critical discussion of “social gerontechnologies,” see Peine et al. (2021). Some also use the more specific term “neuro-gerontechnologies” (e.g., Barresi et al. 2022). However, since we are looking at technologies targeting a contextualized notion of the neurological idea of dementia, we will stick here to the term gerontechnologies.

2. For a more detailed discussion on the new risk factors – for instance the fact that most risk factors are not only more prevalent, but also more difficult to control in less affluent populations – see Leibing (2018) on diverging translations of risk factor management in national contexts, and Leibing and Schicktanz (2021) on the political dimensions of the new risk factors.

3. In a nutshell, a growing number of epidemiological studies have shown that in some contexts – where access to well-functioning healthcare systems is a given, mostly in richer countries (or elites within richer countries) – dementia prevalence has declined in recent years. Researchers believe that this is the case because several of the “Lancet risk factors” are being better taken care of than in the past (Leibing 2018; Leibing and Schicktanz 2021).

4. The Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER) is a multidomain approach to dementia prevention. It consisted of dietary guidance, physical activity, cognitive training and social activities, and intensive monitoring and management of metabolic and vascular risk factors. (see https://alzheimersprevention.org/downloadables/FINGER-study-report-by-ARPF.pdf).