Why Older Adults and Their Children Disagree About In-Home Surveillance Technology, Sensors, and Tracking

Clara Berridge, MSW, PhD; Terrie Fox Wetle, MS, PhD

Disclosures

Gerontologist. 2020;60(5):926-934. 

In This Article

Abstract and Introduction

Abstract

Background and Objectives: Despite the surveilling nature of technologies that allow caregivers to remotely monitor location, movements, or activities, the potential differences in comfort with remote monitoring between caregivers and care recipients have not been examined in depth. On the dyad and aggregate level, we compare preferences of older adult women and their adult children for three remote monitoring technologies. Their assessments of each technology's impact on privacy, safety, independence, freedom, relationship with family member, social life, and identity are also compared.

Research Design and Methods: This dyadic study used cognitive-based interview probing and value-centered design methods. Twenty-eight individual, in-depth, structured interviews were conducted with 18 women who are Meals on Wheels clients and 10 of their adult children.

Results: Meals on Wheels participants reported multiple chronic conditions and an average of 1.7 ADL and 3.3 IADL difficulties; two thirds were enrolled in Medicaid. Adult children preferred each technology more than their mothers did and underestimated both their mothers' ability to comprehend the functions of the technologies and the importance of engaging them fully in decision making. Most were confident that they could persuade their mothers to adopt. For both groups, privacy was the most-cited concern, and participants perceived significant overlap between values of privacy, independence, identity, and freedom.

Discussion and Implications: Studying privacy in isolation overlooks privacy's instrumental role in enabling other values. Shared decision-making tools are needed to promote remote monitoring use consistent with older adults' values and to prevent conflict and caregiver overreach.

Introduction

The surveilling nature of technologies that allow caregivers to remotely monitor the movements and activities of older adults could make such technologies ripe for conflict if not used in accordance with the older adults' preferences and boundaries. The dramatic influx of passive remote monitoring devices has been driven by the promise of benefits of predicting health events, supporting independence, and enhancing safety (Kaye, 2017; Wild, Mattek, Austin, & Kaye, 2016); however, the development of devices without the input of older adults (Ienca, Wangmo, Jotterand, Kressig, & Elger, 2017; Meiland et al., 2017) and without explicit consideration of ethical values (Robillard, Cleland, Hoey, & Nugent, 2018) has limited their efficacy and adoption (Berridge, 2017a; Friedman, Kahn, & Borning, 2002; Ienca et al., 2017). The use of these technologies poses ethical dilemmas and can threaten core values important to older adults, such as autonomy and independence, privacy, control, freedom, and dignity (Alzheimer Europe, 2010; Berridge, 2016; Hofmann, 2013; Ienca et al., 2017; Meiland et al., 2017; Sánchez, Taylor, & Bing-Jonsson, 2017). These technologies may empower family members to observe, infer about, and react to older adults' movements or behaviors, but we know little about how caregivers' and care recipients' assessments of these monitoring practices compare.

Research on passive remote monitoring has identified a tension between values of privacy, freedom, autonomy, and safety. The way in which older adults negotiate these values is commonly referred to as a "tradeoff" or "sacrifice" (Peek, Aarts, & Wouters, 2015). A review of the literature on home monitoring technologies concluded that older adults will trade privacy for autonomy, or the ability to remain living independently (Townsend, Knoefel, & Goubran, 2011). In another study with a high rate of acceptance of in-home monitoring, 60% of users had privacy or information security concerns, and these concerns increased after 1 year of use (Boise et al., 2013). The "zero-sum" trade-off framing has been critiqued for its simplistic creation of mutually exclusive perspectives and for its potential to diminish certain values or perspectives in relation to safety (Cavoukian & Emam, 2010; Mulvenna et al., 2017). Moreover, research on passive monitoring's impact on older adults' privacy and independence has not thoroughly drawn out the meanings associated with these values or why they matter to participants (Shankar, 2010).

Researchers have noted potential differences between older adults and family members with regard to perception of need and comfort with various levels of data granularity (Berridge, 2017b; Hensel, Demiris, & Courtney, 2006; Lorenzen-Huber Boutain, Camp, Shankar, & Connelly, 2011) but these differences have not been carefully examined. Family caregivers who become surrogate decision makers are likely to place less weight than older adults on values and preferences related to maintaining autonomy and relationships, and more weight on physical health and safety (Shelton, Orsulic-Jeras, Whitlatch, & Szabo, 2018). A study of 266 mild–to-moderate dementia care dyads found dyadic level discrepancies in beliefs about each of the five care-related values under study: autonomy, burden, control, family, and safety. Caregivers consistently underestimated how important each is to the individual (Reamy, Kim, Zarit, & Whitlatch, 2011) The study's authors caution that caregivers will often become surrogate decision makers and at the same time lack an accurate understanding of their loved one's values (Reamy et al., 2011).

A small body of research describes negative effects of incongruent perceptions of values held by caregiving dyads for quality of life for both members of the dyad (Moon, Townsend, Whitlatch, & Dilworth-Anderson, 2017). Older adult care recipients experience threats to their sense of self (Gomersall et al., 2015), physical and psychological health, and autonomy (Brown, 2007) when their preferences are not accommodated. Given these negative consequences, it is important to compare the ways in which members of care dyads understand and weigh values at play in the increasingly popular care practices of passive remote monitoring. How do dyad members' ideas about affected values compare, and do family members share an assessment of how important those values are? That is, do members of care dyads agree about the trade-offs described in the literature? We consider these preferences in combination and in comparison because the negotiation of needs, resources, and risks is a relational practice. The very capacity to choose an intervention occurs within the context of relationships of dependence (Gomez, Mantovani, & De Hert, 2013).

This study engages participants who are Meals on Wheels clients because they have experience with need for support, in the form of delivered meals, to remain living independently. The participation of a low-income sample of older adults who are unable to leave their home without assistance and who have multiple chronic conditions and activities of daily living and instrumental activities of daily living (ADL and IADL) needs is unique. This is an important population to engage because Medicaid is the first third-party payer in the United States to cover passive remote monitoring in Home and Community-Based Services (HCBS; Berridge, 2018), yet there is very little research on this demographic's needs and preferences regarding technology-based services.

In this article, we present a systematic comparison of mother–adult child dyads' assessments of values at play in three forms of passive remote monitoring: location tracking, in-home activity sensors, and 24-hr Web cameras. This research identifies potential differences between older adults and family members who are likely to exert strong influence over decisions about adoption or who may become surrogate decision makers. We conclude with recommendations for practice and policy to make sure potential differences are represented and considered in decision making. This line of inquiry is pressing at a time of dramatic influx of technologies with a monitoring component and the important ethical issues this has raised and will continue to raise.

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