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

• Published in: Aging & mental health 2024-11, Vol.28 (11), p.1447-1456
• Main Authors: Hevink, Maud, Linden, Iris, de Vugt, Marjolein, Brodaty, Henry, Low, Lee-Fay, Phillipson, Lyn, Jeon, Yun-Hee, Gresham, Meredith, Doucet, Shelly, Luke, Alison, Vedel, Isabelle, McAiney, Carrie, Szcześniak, Dorota, Błaszkiewicz, Maria, Rymaszewska, Joanna, Verhey, Frans, Wolfs, Claire
• Format: Article
• Language: English
• Subjects: Aged; Aged, 80 and over; Australia; Canada; caregiver; Caregiver burden; Caregivers; Caregivers - psychology; Content analysis; cross-country; Dementia; Dementia - diagnosis; Dementia disorders; Diagnosis; Diagnostic systems; Emotions; Female; Focus Groups; Geriatric psychiatry; Health care industry; Health planning; Health services; Humans; Male; Medical diagnosis; Middle Aged; Netherlands; Older people; Poland; Projective techniques; qualitative; Qualitative analysis; Qualitative Research; Social networks; Social organization; Social Support; support; Support networks; Support systems; Well being
• ISSN: 1360-7863; 1364-6915; 1364-6915
• DOI: 10.1080/13607863.2024.2342968

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. Qualitative study using projective techniques during online focus groups, online and telephone interviews with people with dementia and caregivers. 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. 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.