| 81 4 In the surveys, the term ‘care plan’ is defined as ‘ a written plan about your health and social care needs relating to dementia, the treatments and services to meet those needs, and who is providing them’. The overarching term ‘experiences with support’ pertains to experiences and satisfaction with information and advice, health literacy and access to support, and confidence in their ability to live well with dementia. Table 1. Number of questions per section for survey for people with dementia and informal caregivers. Sections in survey People with dementia Informal caregivers Demographic characteristics 7 7 Experiences and satisfaction with the diagnostic process 12 11 Quality of life 1 1 Experiences and satisfaction with post-diagnostic support 9 16 Role as caregiver † - 4 COVID-19 ‡ 3 3 Open question 1 1 Note. † Section only presented in informal caregiver survey. ‡ Questions on the impact of COVID-19 were added shortly after data collection began. Statistical analysis SPSS version 25 was used for statistical analyses. Each country combined online survey data with a pre-formatted SPSS file that contained manually entered data from postal surveys. The primary author merged data from all countries. Descriptive statistics were applied to demographic characteristics, and experiences and satisfaction with support of people with dementia and informal caregivers. Percentages of strongly agree, neither disagree nor agree and strongly disagree were examined for statements regarding our three domains of support. Answer options ‘not applicable’ and ‘I don’t know’ were excluded from the analysis as exact reasoning behind these options was unknown (participants did not receive this type of support, did not remember receiving it, or did not have an opinion). Appendix C provides an overview of excluded data. Chi-square tests compared people with dementia and informal caregivers on ordinal data on information and advice, access to support, and confidence in the ability to live well with dementia. Additionally, Chi-square tests compared those people with dementia and informal caregivers who were satisfied with
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