Experiences in coping with dementia and the role of support; a qualitative study of the COGNISANCE project

Objective: People with dementia and informal caregivers utilize a variety of coping strategies to deal with the consequences of a dementia diagnosis. In the beginning they often rely on informal support, but research shows that they could benefit from formal support. The societal and cultural context may also influence how people deal with dementia. Yet, most research that takes place across countries or cultures provides little detail about cross-country differences or similarities. The purpose of this qualitative study is firstly to describe experiences of receiving a diagnosis and experiences, barriers and facilitators towards post-diagnostic support and secondly, and to examine differences and similarities between countries Methods: A cross-country qualitative study with people with dementia recently diagnosed and their informal caregivers was carried out in Australia, Canada, the Netherlands and Poland between March 2020 and September 2020. A wide range of recruitment strategies and methods was adopted to aid recruitment and participation during the covid pandemic. Participants could participate in (online) Individual and dyadic interviews as well as online focus groups. To examine experiences after diagnosis and support, methods utilized ‘projective techniques’ whereby participants could project their experiences onto two fictional characters (a person with dementia, and her informal caregiver). A multi-step iterative inductive qualitative content analysis was carried out. Results: 23 people with dementia and 53 informal caregivers participated. The following themes were identified; ‘getting a diagnosis, ‘coming to terms with dementia’, ‘support from friends and family’, ‘formal support’, ‘adapting to the role of informal caregiver’ and ‘living well with dementia’. ‘Formal support’ and ‘support from friends and family’ could serve as a barrier, facilitator or both in relation to ‘coming to terms with dementia’ and ‘adapting to the role of informal caregiver’. Coming to terms was a necessity for living well with dementia. ‘Adapting to the role of informal caregiver’ was an ongoing adaption process that was part of ‘coming to terms with dementia’ and extended into ‘living well with dementia’. Similarities of the themes across countries were larger than the differences. Conclusion: Support should enable the process of coming to terms with dementia in a culturally appropriate manner.