Marike Hettinga

Involving people with dementia in the development of supportive IT applications: A systematic review

BACKGROUND Involving people with dementia in research is not self-evident. Inclusion of people with dementia in the development process of user-friendly, supportive IT applications may be especially useful to improve the quality of these applications and may be beneficial to the person with dementia. The aim of this study was to gain insight into the involvement of people with dementia in developing supportive IT applications. The focus of involvement was on phase, methods, role and impact on the quality of the IT application and on the person with dementia. METHOD A systematic search was undertaken using Cochrane Library, PubMED, PsycInfo, EMBASE, and CINAHL. Publications were selected using the following inclusion criteria: publications had to address a development process of an IT application involving people with dementia. The BMJ checklist was used to assess the quality of the included publications. RESULTS Twenty-six publications relating to 15 IT programs met the inclusion criteria. People with dementia were mainly involved in the exploratory and technical development phases. The methods most frequently used to involve the participants were interviews, observations and usability try-outs. In most studies, participants were objects of study and informants. People with dementia provided useful feedback and gave valuable recommendations for researchers and designers regarding the development of user-friendly, supportive, IT applications. Involvement in all phases may have empowering effects on people with dementia. CONCLUSION To develop valuable, user-friendly, supportive IT applications that increase the quality of life of people with dementia involvement in all phases of the development process is of great importance.

An Interactive Web Tool for Facilitating Shared Decision-Making in Dementia-Care Networks: A Field Study

Background An interactive web tool has been developed for facilitating shared decision-making in dementia-care networks. The DecideGuide provides a chat function for easier communication between network members, a deciding together function for step-by-step decision-making, and an individual opinion function for eight dementia-related life domains. The aim of this study was to gain insight in the user friendliness of the DecideGuide, user acceptance and satisfaction, and participants’ opinion of the DecideGuide for making decisions. Materials and methods A 5-month field study included four dementia-care networks (19 participants in total). The data derived from structured interviews, observations, and information that participants logged in the DecideGuide. Structured interviews took place at the start, middle, and end of the field study with people with dementia, informal caregivers, and case managers. Four observations of case managers’ home visits focused on members’ responses and use of the tool. Results (1) The user friendliness of the chat and individual opinion functions was adequate for case managers and most informal caregivers. Older participants, with or without dementia, had some difficulties using a tablet and the DecideGuide. The deciding together function does not yet provide adequate instructions for all. The user interface needs simplification. (2) User acceptance and satisfaction: everybody liked the chat’s easy communication, handling difficult issues for discussion, and the option of individual opinions. (3) The DecideGuide helped participants structure their thoughts. They felt more involved and shared more information about daily issues than they had done previously. Conclusion Participants found the DecideGuide valuable in decision-making. The chat function seems powerful in helping members engage with one another constructively. Such engagement is a prerequisite for making shared decisions. Regardless of participants’ use of the tool, they saw the DecideGuide’s added value.

Involving people with dementia in developing an interactive web tool for shared decision-making: experiences with a participatory design approach

Abstract Purpose: The aim of this study was at gaining insight into the participatory design approach of involving people with dementia in the development of the DecideGuide, an interactive web tool facilitating shared decision-making in their care networks. Method: An explanatory case study design was used when developing the DecideGuide. A secondary analysis focused on the data gathered from the participating people with dementia during the development stages: semi-structured interviews (n = 23), four focus group interviews (n = 18), usability tests (n = 3), and a field study (n = 4). Content analysis was applied to the data. Results: Four themes showed to be important regarding the participation experiences of involving people with dementia in research: valuable feedback on content and design of the DecideGuide, motivation to participate, perspectives of people with dementia and others about distress related to involvement, and time investment. Conclusions: People with dementia can give essential feedback and, therefore, their contribution is useful and valuable. Meaningful participation of people with dementia takes time that should be taken into account. It is important for people with dementia to be able to reciprocate the efforts others make and to feel of significance to others. Implications for Rehabilitation People with dementia can contribute meaningfully to the content and design and their perspective is essential for developing useful and user-friendly tools. Participating in research activities may contribute to social inclusion, empowerment, and quality of life of people with dementia.