Maud Hevink

| 158 had ended’. These negative emotions seemed to be magnified when they had had negative experiences with the disclosure of the diagnosis. In addition, these negative emotions seemed to be magnified by the presence of stigma attached to dementia in Australia and Poland. Worries about the future, how dementia would progress and its consequences were expressed by caregivers in Australia and the Netherlands and people with dementia in the Netherlands and Canada. ‘At first a person is broken, it seems that this is the end of the world, that life is ending’. (Polish person with dementia) Start moving forward & accepting Over time, people with dementia and caregivers were determined to move forward, and most recognized a diagnosis as a new beginning. Australian, Canadian and Polish caregivers were relieved knowing what caused the changes they observed in their loved ones. People with dementia talked about changing their view on life with dementia once they realized that dementia is not the end of the world and that living well with dementia is still possible. This helped them in taking the first steps towards acceptance and coming to terms with dementia. Australian and Polish people with dementia described a pragmatic or positive attitude as key to moving forward. Dutch people with dementia focused on what they could still do as part of their acceptance process. In Australia and Canada, there was hope to live well with dementia whilst Polish caregivers saw moving forward as a proactive process. ‘Life still goes on and there’s still lots of happy moments. They’re not the same person, perhaps that they were previously, but, you know, you kinda make the best of it’. (Canadian caregiver) Navigating life with dementia as a caregiver Caregivers struggled to adjust to their new role as a caregiver once their loved one received a diagnosis. This ongoing process coincides with the process of coming to terms with dementia and preparing and caring for the future. The difficulty of adjusting to dementia symptoms. Caregivers struggled with seeing their loved one with dementia change over time. They observed their loved one losing certain cognitive skills. It proved difficult to deal with changes in behaviour such as mood and personality.

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