Involving older people with dementia and their carers in designing computer based support systems: some methodological considerations

Older people with dementia are a particularly challenging user group to involve in the process of designing interactive systems that could assist them. It may also be difficult to involve family caregivers of people with dementia, as they are most likely to be older themselves and uncertain about technology. Paid care staff, whilst younger, may be unclear about the benefits of technology and lack confidence in their ability to incorporate it into their work. Over the past 7 years, the authors of this paper have worked closely with people with dementia, their families and professional care staff to develop and evaluate a multimedia computer system to support communication between people with dementia and caregivers. To achieve this, a number of user involvement issues were addressed, ranging from legal and ethical considerations of working with people with dementia to the reluctance of hard-pressed staff to add to their workload for a research project. In addition, developing and conducting evaluations and eliciting the views of people with dementia who have working memory impairment plus additional cognitive and social difficulties emerged as a central issue. A variety of approaches were explored within this project, which are described in this paper, including familiarizing the whole team with the unique difficulties posed by dementia, continuous confirmation of participants’ consent, and ways to measure enjoyment, engagement, and joint interaction using observation.