Table 1.
Overview of research methods for the inclusion of PwD
| Method used for involvement | PwD target | Grade of activity | Approach for/relevant outcomes | Instruments used | Applied in project |
|---|---|---|---|---|---|
| Observations | All | + | Observations during the first consultation round were an implicit part of the DAD project; movements and activity of the participants in the consultation rounds were observed to assess the capacity of PwD in using a PC The PC was operated by the spouse without dementia | DAD scoring-list for keyword search and PC-operating activities [4] | DAD, BEZO, MedGUIDE |
| BEZO project: residents of the common room with no intervention were also present in the room in which the intervention was executed; the speech intelligibility [13] and light conditions were improved in the intervention room [14], and all PwD being residents of that room received a private space in the room cabinet | BEZO scoring for their behavior/viewing direction from a light context based on van Hoof et al. [12] (2012) | ||||
| MedGUIDE project during the home visits, the PwD and next of kin were observed by the interviewer and asked to show their daily routines in medication storages and reminders and routines of intake; pictures were taken of these situations | MedGUIDE observations were done according to the research protocol [7] during the at-home visits to get insight in PwD daily routines | ||||
| Consultations | Early dementia | ++ | Three consultation rounds were held; the first consultation round concerned the determination of participants' view on websites in general The second consultation round examined how participants search for information about dementia-friendly housing and which keywords they use in this search A third consultation round was scheduled to gather feedback about the developed demonstration version of the website Participants' expectation was that the website to be designed should contain relevant information about home modifications A relevant outcome is that the website has to be designed accessibly comparable to reading a book | USE questionnaire [15] Demonstration website designed based on consultation findings Questions based on Krout's seven as for community support [16] Google Analytics to assess the use of the demonstration website | DAD |
| Storytelling | Early onset | +++ | This approach was used to get a better understanding about the daily life of PwD; a relevant outcome is that PwD have accommodated to a very structured daily routine so they can receive reminders for their medication intake | Open structured interviews | MedGUIDE |
| Focus group sessions | Moderate dementia | ++/+++ | This approach was used to get a better understanding of how older people with dementia see the ethical aspects of track and trace technologies for asset management | Semistructured approach to questions | SCHAT |
| Thinking-aloud sessions | Early onset | + + + | This approach was used to receive instant feedback from PwD for the clickable design of the MedGUIDE platform which was shown at their home; the outcome is that they wished the system to be personalized and the ICT skills needed to use the tool should be easily accessible taking into account all the levels of health literacy; they really liked the reliable information about the diagnoses and prognosis of dementia | Clickable design of the platform | MedGUIDE |
| Photo-production and interviews | Early onset / moderate dementia | ++ | A visual research method was chosen, in which people are interviewed based on photographs they have taken themselves with cameras supplied to them by the research team; photography allows participants to create a record of an event, capture a complex phenomenon or to tell a story through images; as taking photos does not rely on language alone, it can be used with vulnerable or frail populations who might not normally be included in research; a photo only serves as a conduit to enhanced, thoughtful and deliberative narrative, instead of as a replacement of words; photography allows complex environmental, health and social issues to be captured and then shared with other people; the photoproduction method enables researchers to experience a phenomenon from another point of view | Semistructured approach to interview questions supplemented by photographs | VETO |
+, passive (no conversation); ++, intermediate, i.e. saying some sentences/words; +++, active (complete conversations).