| 89 4 Discussion This study aimed to describe people with dementia and informal caregivers’ experiences of support and compare their respective experiences. We highlight that although more than half of people with dementia and informal caregivers were satisfied with the support received, there still was a significant proportion who indicated they were not satisfied with support. This is consistent with how patients with other neurodegenerative and life-threatening diseases such as cancer, perceive support (24, 25). We demonstrate low to moderate satisfaction rates on dementia-specific information for people with dementia and informal caregivers. Information is an important component of support and often the first support people access, these findings emphasize the need for improving information provision about dementia. Our findings are consistent with previous studies that showed people with dementia and informal caregivers perceive a lack of information upon diagnosis (15, 26). Information and advice about managing behavioral issues are important in addressing unmet informal caregiver needs; however, our findings highlight that the majority are not satisfied with this type of information (27). These results support findings by Steiner, Pierce (28) whereby informal caregivers indicated needing information on dementia-related behavioral changes. Our results suggest information is not readily accessible to people with dementia and informal caregivers as health literacy and information-seeking preferences may play a vital role in access to information. Informal caregivers preferably receive information from their healthcare professional who knows them and is familiar with their needs and preferences and often expect them to direct towards trustworthy and relevant information (26). At the same time, informal caregivers perceive that healthcare providers sometimes lack dementia-specific knowledge, indicating that they are not the best accessible information source (29). Additionally, informal caregivers report encountering several barriers when accessing information, such as not knowing where to find information or not being aware of the available information on support options (18, 20). Additionally, our findings indicate that people with dementia may have even more difficulty accessing information than informal caregivers. Most information sources target informal caregivers (30). Our findings reinforce the notion that current information is not fulfilling people with dementia’s need for easily accessible information. There is a need for enhancing the connection
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