| 80 include 50 people with dementia and 50 informal caregivers. A broad range of recruitment strategies was used and is described in more detail in Appendix A. People with dementia were eligible if they had received a dementia diagnosis in the previous 24 months and could provide informed consent. Informal caregivers were eligible if they provided self-identified support to a person with dementia. People with dementia and informal caregivers did not have be a dyad to participate. Procedures Each country obtained ethical approval. The study was executed according to the Helsinki Declaration (23). Researchers provided potential participants with study information and they could be contacted in case of additional questions. Postal surveys obtained written informed consent before participation. In online surveys, participants provided written informed consent or ticked a box prior to starting the survey that acted as consent, this was dependent on the country’s ethical requirements. Data collection took place in 2020 (January – July). Surveys were anonymously completed on paper or online, depending on participant capabilities and preferences. People with dementia could be assisted by a family member or researcher if needed. Online surveys were distributed via online survey tools (Google Form, LimeSurvey, RedCAP, and Qualtrics); in accordance with ethical requirements in each country. Codebooks assisted with consistent data collection and analysis across countries. Surveys The research team, including one person with dementia, identified important topics and developed two surveys – one for people with dementia and one for informal caregivers. Preliminary surveys were tested by five people with dementia and five informal caregivers per country. The surveys were adapted and truncated to improve participant understanding and engagement. The surveys which were developed in English and translated into French, Dutch, and Polish (Appendix B). The surveys took approximately 30 minutes to complete. Table 1 shows the topics. Each section included brief instructions on how to answer the items. Questions were single-choice questions and included an ‘I don’t know’ option.
RkJQdWJsaXNoZXIy MTk4NDMw