Enhancing Online Privacy and Reducing Scam Risk for Older Adults with Dementia and their Care Partners
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SUMMARY/ABSTRACT People living with cognitive impairment (PLWCI), including mild cognitive impairment (MCI) and mild-to- moderate Alzheimer’s disease and related dementias (ADRD) rely on the internet to connect with loved ones, stay abreast of current events, and manage their finances and medical care: activities that likely slow cognitive decline. However, during routine web browsing, PLWCI and care partners are frequently exposed to tracking technologies that transfer personally identifiable data to advertisers, data brokers, and technology firms, allowing prediction of individuals’ age, income, and other identifiers. This facilitates targeting and may expose PLWCI and care partners to advertisements which may harm their health and finances. The proposed research uniquely contributes to the field by advancing innovative research into the privacy of older adults with MCI and ADRD and by refining existing interventions for PLWCI and care partners to protect them from online risks. PLWCI may be vulnerable to these risks due to the nature of cognitive impairment. Therefore the proposed work aims to: Aim 1A) Collect and categorize the advertising PLWCI and care partners are exposed to for dementia treatments (FDA regulated and unregulated) and misleading advertising for low-value or fraudulent health and financial products, using a web browser plug-in as well as phone and device software proven in past studies. We will then 1B) determine the degree to which that exposure is modified by behaviorally targeted advertising, by comparison with ads shown to anonymous browsers on the same website. Aim 2) Elicit the dyad’s knowledge of internet privacy issues and understand their perception of determinants of adopting privacy-increasing interventions. Qualitative interviews with 20-30 PLWCI and their care partners (40-60 interviews total) recruited from the Penn Memory Center will assess awareness of internet privacy concerns, current approaches employed to promote internet privacy, and perceptions of available privacy- increasing approaches, including education, one-time software modification, and assistive monitoring. Aim 3A) Adapt and integrate elements of existing privacy-enhancing tools and approaches into a multimodal intervention tailored to the needs of the dyad through iterative cycles of feedback and refinement with dyads. 3B) Convene a focus group of shareholders who could deliver the intervention (e.g., social services agencies, librarians, clinicians) to understand barriers and facilitators to implementation of the intervention in their respective settings. The proposed work will enhance the health and financial safety of PLWCI and care partners through innovative methods across computer science, ethics, cognitive neurology, and causal inference.
