Ageing is Not a Disease: Pitfalls for the Acceptance of Self-Management Health Systems Supporting Healthy Ageing
Ine D’Haeseleer, Kathrin Gerling, Dominique Schreurs, Bart Vanrumste, Vero Vanden Abeele · 2019 · Proceedings of the 21st International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS 2019) · doi:10.1145/3308561.3353794
Summary
This paper reports on a qualitative study with 20 older adults (mean age 80, range 65-92) in Belgium, investigating their attitudes towards self-management health systems (SMHS) — integrated solutions that combine data from sensors and self-reports with risk assessment and decision support to promote healthy ageing. The study is notable for including the "oldest old" (80+), a population almost entirely absent from health technology research despite being the fastest-growing demographic globally and consuming three times more healthcare resources than those aged 65-74. Three focus group discussions lasting 2-3 hours each were conducted at a residential care centre, with participants living independently either at home or in service flats. Through thematic analysis, four themes emerged: enforced use of technology (participants felt compelled to use ICT by a society that increasingly requires digital skills for basic tasks like taxes and banking), need for support in technology use (heavy reliance on children and grandchildren to introduce and troubleshoot technology), equivocal stance towards sharing data (dismissive of social media privacy but protective of health data from relatives, while open to sharing with healthcare professionals), and hypothetical value of technology for healthy ageing (ambivalent, with many saying they would use SMHS only if their physician told them to, while others saw no benefit as they considered themselves healthy enough).
Key findings
The paper identifies four pitfalls unified by the central concept "ageing is not a disease": (1) Applying a deficit-focused perspective on ageing — SMHS that emphasise cognitive and physical decline through questionnaires and measurements that highlight what users can no longer do actively deter adoption. Design consideration: focus on positive trends rather than decline, and never compare older adults’ results to age-blind normative datasets. (2) Assuming a sense of urgency to engage with technology for healthy ageing — older adults who consider themselves in good health see no need for preventive monitoring ("As long as we are in good health, we don’t need that"). Design consideration: communicate benefits directly to older adults themselves, not just caregivers. (3) Adding barriers by enforcing technology use — participants felt frustrated by rapidly changing interfaces and growing ICT requirements, describing feelings of being a "burden" on society. Design consideration: include training and support, acknowledge relatives as important stakeholders, and never design SMHS to replace face-to-face contact with others or physician visits. (4) Designing for homebound persons instead of engaged, active users — contrary to stereotypes of frail, isolated elderly, participants led purposeful, outbound lives filled with volunteering, hobbies, and social activities. Design consideration: design for diversity among older adults, allow customisation, and design for active lifestyles rather than passive home monitoring.
Relevance
This paper challenges fundamental assumptions embedded in much health technology designed for older adults. The finding that older adults actively resist the medicalisation of ageing — viewing SMHS as framing normal ageing as pathology — has direct implications for how accessibility practitioners approach health monitoring design. The nine design considerations are immediately actionable: avoid deficit-focused language and measurement, ensure benefits are communicated to older adults themselves (not just their caregivers or physicians), include training and technical support as core features, never reduce face-to-face interaction, let users control data sharing with fine-grained distinctions between relatives and healthcare professionals, respect diversity within the older adult population, and design for active rather than homebound lifestyles. The reluctance to share health data with family members — not from privacy concerns but to avoid burdening loved ones with worry over sporadic bad results — is a nuanced finding with design implications: SMHS should present contextualised trends rather than decontextualised snapshots.
Tags: aging · older adults · health monitoring · self-management · digital inclusion · ageing in place · privacy · digital divide · participatory design · user attitudes