| 163 6 ‘Luckily I also talk about that with the children and there comes a time when things will go differently, with eventually, with or without intermediate steps such as out-of-home placement’. (Dutch caregiver) Discussion This study aimed to describe people with dementia and caregivers’ experiences of receiving a diagnosis and formal and informal support across four countries. After diagnosis, there are dynamic and complex coping-adaptation processes of coming to terms with dementia and preparing for the future. These are affected by formal support and support from the social network. Caregivers need to adapt to their new caregiving role which is an ongoing process. We found more similarities across countries than differences emphasizing people with dementia and caregivers to some extent face universal problems. These findings are in line with previous research that demonstrated unmet needs of caregivers are largely similar across different countries and healthcare systems (43). People experience profoundly negative emotions but are also able to move forward, in line with previous findings (7). A combination of formal support and informal support from the social network was important to assist in accepting and moving forward. We confirmed the notion that caregivers need more support than either the formal support system or friends and family members can offer them alone (44). Additionally, people with dementia utilize multiple sources of support to come to terms with dementia (45). The formal support system and informal support from the social network work together to help people come to terms with dementia. Our data suggests that in Poland there is a greater reliance on informal support compared to the other countries. This could be explained by the fact that in Poland, there is a low availability of professional support and a lack of systemic dementia care (46). In addition, it is common that in cultures with large familial responsibilities, family fulfils a substantial role in caring for someone with dementia (47). We briefly highlight that stigma was identified as a perceived barrier to receiving support in Australia and Poland. Stigma has been associated with decreased help-seeking (48). In Australia, stigma around dementia has been documented, particularly for those from a minority background (49). In Poland, dementia stigma can deter caregivers from seeking help and discussing the diagnosis openly (50). While stigma was not identified as a barrier to help-seeking in the Netherlands and
RkJQdWJsaXNoZXIy MTk4NDMw