| 159 6 ‘Character changes dramatically in this disease and she no longer thinks about what I feel or about someone else, but basically lives in her own world. And it is difficult for a loved one to accept’. (Polish caregiver) Being responsible for the person with dementia Caregivers felt a huge responsibility to take care of the person with dementia. They felt responsible for their well-being and had to arrange formal and informal care. Caregiver burden was present as a result of these new responsibilities, and this affected caregivers’ wellbeing. ‘She hides a lot of things but it’s a constant worry, you know, is she eating? is she bathing? You know, those things’. (Canadian caregiver) Balancing own well-being with that of the person with dementia Australian, Canadian and Dutch caregivers expressed difficulty in prioritizing their own well-being. Australian, Canadian and Polish caregivers struggled to balance their jobs, their own well-being and that of the person with dementia. ‘My mother is of the half empty glass. Lonely, depressed, I feel like her wellbeing depends on me. And I find that very difficult’. (Dutch caregiver) The social network as a source of support People with dementia and caregivers expressed they greatly valued support from their social network (friends and extended family members), this social support facilitated the process of coming to terms with dementia as it allowed the social network to provide emotional and practical support. Sharing the diagnosis as a first step To obtain support from the social network, the diagnosis had to be shared. However, some Australian, Canadian and Polish caregivers reported that they or the person with dementia were reluctant to share the diagnosis due to shame, stigma, or fear of emotional consequences. Other Australian and Dutch caregivers tended to be open about the diagnosis with people around them, they found it difficult but helpful. ‘In my mother-in-law’s case she doesn’t want anyone to know, and she doesn’t think anybody would notice. I mean, if you spend any amount of time with her you pick that up quite quickly, that she has memory issues, but she doesn’t think they know, and she does not want us to tell anybody’. (Canadian caregiver)
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