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

Abstract

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.

How Can We Develop AAC for Dementia?

“…CIRCA is a multimedia computer system developed to make possible again freeflowing conversation between people with dementia and caregivers [1][2][3][4][5]. The system is based on presenting reminiscence materials from a wide range of archives.…”

“…Projects, however, can be built on an evidence base derived not from interviews or questionnaires, but from direct observation of users interacting with an evolving series of prototypes. Where necessary, this can involve video-recording, transcribing, and coding sessions to enable a very fine-grained analysis of the interaction [2], [4]. It is widely accepted that user involvement in the design process and understanding the user is highly desirable [24].…”

“…ii Developments must take account of the needs, abilities and desires of the intended users, especially in respect of the cognitive impairments of people with dementia, which can interfere both with their ability to participate in the development process and their ability to use new technology once it is created [4].…”

A Review of Contemporary Work on the Ethics of Ambient Assisted Living Technologies for People with Dementia

“…Rolling informed consent involves: a) the necessity of repeatedly providing information on an iterative basis (i.e. not only when requested), and also asking for consent during the various stages of the treatment/research, b) listening to the content and nuances of the speech of PwD and continuously assessing whether her participation is voluntary and not subjected to coercion, persuasion, manipulation, or simple distress, which if so subjected, would be sufficient reason to end the session for the researcher without needing the expressed request of the participant (Astell et al, 2009), while also c) communicating the possibility of opting-out or withdrawing from treatment/research at any given stage. Rolling informed consent in the case of PwD does not result in a single-event legal act but rather, is a continuous consideration of the choices made by the vulnerable person.…”

Design and Field Evaluation of REMPAD: A Recommender System Supporting Group Reminiscence Therapy

“…This consisted of a cabinet containing themed globes, which when placed in a holder initiated videos displayed on a TV screen, which were based on the associated theme, for example nature, holiday, or football. CIRCA, an interactive computer system designed to facilitate conversation between people with dementia and care staff, used a multimedia database of generic photographs, music and video clips to support reminiscence [9]. Astell et al maintain that generic content is more beneficial than personal content as it promotes a failure-free activity for people with dementia, as there are no right or wrong memories in response to the stimuli.…”