Moving forward with dementia: an explorative cross-country qualitative study into post-diagnostic experiences

Maud Hevink, Iris Linden, Marjolein de Vugt, Henry Brodaty, Lee Fay Low, Lyn Phillipson, Yun Hee Jeon, Meredith Gresham, Shelly Doucet, Alison Luke, Isabelle Vedel, Carrie McAiney, Dorota Szczesniak, Maria Blaszkiewicz, Joanna Rymaszewska, Frans Verhey, Claire Wolfs*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Objectives: This explorative cross-country qualitative study aims to describe experiences of receiving a dementia diagnosis and experiences of support following a diagnosis in Australia, Canada, the Netherlands and Poland. Method: Qualitative study using projective techniques during online focus groups, online and telephone interviews with people with dementia and caregivers. Results: Twenty-three people with dementia and 53 caregivers participated. Qualitative content analysis revealed five themes; (1) ‘Coming to terms with dementia’ helped people deal with complex emotions to move forward. (3) ‘The social network as a source of support’ and (4) ‘The challenges and realities of formal support’ and impacted ‘Coming to terms with dementia’. (2) ‘Navigating life with dementia as a caregiver’ highlights caregiver burden and was impacted by (4) ‘The challenges and realities of formal support’. People were (5) ‘Self-caring and preparing for tomorrow’ as they focused on maintaining current health whilst planning the future. Despite differences in healthcare and post-diagnostic support systems, there were more similarities across countries than differences. Conclusion: Across countries, formal support and support from friends and family are crucial for people with dementia and caregivers to come to terms with dementia and maintain carer wellbeing to ultimately live well with dementia.
Original languageEnglish
Number of pages10
JournalAging & Mental Health
DOIs
Publication statusE-pub ahead of print - 1 Jan 2024

Keywords

  • caregiver
  • cross-country
  • Dementia
  • qualitative
  • support

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