| 91 4 These results suggest that information and advice could serve as a means to further increases overall satisfaction with support for informal caregivers. Increased overall satisfaction with support has the potential to improve quality of life and decrease caregiver burden as this has been associated with fewer unmet needs (34). Numerous studies have also underpinned the importance of information provision for informal caregivers (27, 35). Further studies should investigate whether there is a relationship between satisfaction with information and advice and informal caregivers’ confidence in their ability to live well with dementia. While most research focuses on informal caregivers’ experiences and proxy reports of experiences of people with dementia, our study was unique by including both perspectives. We were able to demonstrate that their experiences do not always align. Our study has a rich data set as it collected data from five countries across three continents. We have successfully utilized online surveys, allowing us to continue data collection during the first wave of the COVID-19 pandemic, we maintained flexibility by offering postal surveys to those with limited digital skills. Our sample primarily included people who had been diagnosed before the onset of the COVID-19 pandemic. After the data collection had started, we added questions on the impact of COVID-19 on dementia. We do not report on them as they fall outside the scope of this paper. However, it has been well documented that COVID-19 has had a negative effect on people with dementia and the support for them and informal caregivers (36, 37). This study encountered some limitations as COVID-19 impacted our study in several ways. Some countries had delays in securing ethical approval or trouble recruiting participants. In the UK, recruitment was completely paused for a while. Therefore, the number of people with dementia who participated was lower than initially expected. We were statistically unable to examine cross-country differences and caution is advised in terms of generalizability of our findings, in particular those findings incorporating data from people with dementia. In addition, we planned to recruit an ethnically diverse sample. The majority of our sample had a Caucasian background as we were limited in our recruitment strategies due to Covid. Future research should take into account the recent recommendations on the inclusion of minority populations in dementia research by Brijnath and Croy (38).
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