Requirements Gathering with Alzheimer's Patients and Caregivers
Kirstie Hawkey, Kori M. Inkpen, Kenneth Rockwood, Michael McAllister, Jacob Slonim · 2005 · Proceedings of the 7th International ACM SIGACCESS Conference on Computers and Accessibility (Assets '05) · doi:10.1145/1090785.1090812
Summary
This paper presents a requirements gathering study for an information appliance designed to alleviate repetitive questioning behaviour in people with Alzheimer's disease (AD), a leading cause of caregiver stress. The interdisciplinary team from Dalhousie University's Computer Science and Medicine faculties conducted semi-structured interviews with seven patient-caregiver pairs (four with mild AD, three with moderate AD) at the QEII Health Sciences Centre in Halifax, Nova Scotia. Patients were interviewed separately and asked to speak freely about their experiences, while caregivers were interviewed for 20-30 minutes about the nature and patterns of repetitive questioning. The study identified five main categories of repetitive questions: time ("What time is it?"), schedule ("What day is it? When do I have to go?"), current event details ("Where are we going? Who are we going to see?"), information ("Did I take my pill? Have I had breakfast?"), and opinions/feedback ("Am I doing this right?"). Information needs fell into several subcategories including daily schedule, advance notification of events, recent history, personal information about family and friends, and reassurance. The research also documented current coping strategies — primarily calendars, notes, and diaries — and their limitations.
Key findings
Repetitive questioning was a daily problem for all caregivers, though the amount varied depending on the day's activities and the patient's anxiety level. Questioning typically increased around approaching mealtimes. Questions occurred both at home and away from home, though moderate AD patients primarily questioned at home. Patients and caregivers often disagreed about the frequency and nature of questioning — patients sometimes confirmed problems their caregivers reported, but also sometimes contradicted them, illustrating the challenge of determining the "fluid reality" of AD patients where it can be difficult to assess how much memory loss they are aware of. Only three of seven pairs actively maintained calendars or information sources; others found them ineffective. Patients's interaction abilities were limited: five of seven pairs had never used a computer, all caregivers were elderly, and most had difficulties with reading absorption, writing, hearing, or fine motor skills. The researchers identified key design requirements: the device must be simple, present information proactively (not requiring the patient to remember to check it), provide timely and relevant information, support caregiver configuration, and not resemble a computer or complex device. Speech output may be feasible but touch input appeared more promising than keyboards.
Relevance
This study provides a model for conducting user research with cognitively impaired populations — a growing need as populations age worldwide. The methodological challenges documented are valuable for any researcher working with dementia or cognitive disability: participants may not reliably report their own behaviour, caregivers and patients may give contradictory accounts, and the researcher must navigate the ethical complexity of validating information without undermining the patient's dignity. The finding that most patients and caregivers were elderly non-computer-users with multiple physical limitations (vision, hearing, fine motor) underscores that assistive technology for cognitive impairment cannot assume any technology literacy and must be designed for compounding impairments. For accessibility practitioners, the paper's taxonomy of repetitive question types and information needs provides a foundation for designing cognitive support tools. The emphasis on proactive information delivery — rather than requiring users to seek information — is a design principle applicable well beyond dementia care, relevant to any context where memory or cognitive load is a barrier.
Tags: Alzheimer's disease · dementia · cognitive accessibility · assistive technology · user-centered design · caregiving · requirements gathering · information appliance · cognitive impairment · aging