People with dementia disclosing their diagnosis to social networks: A systematic review and meta-synthesis

Background and objectives: Given the stigma of dementia, individuals with the condition may be wary to disclose their diagnosis to other people, both in face-to-face and digital settings. While sharing one's dementia diagnosis with others is essential for accessing valuable support for social, cognitive, and physical well-being, this area of research has largely been neglected. In this meta-synthesis, we aimed to systematically review qualitative research on the factors associated with online and offline self-disclosure in people with dementia.

Research design and methods: We conducted a systematic search in six electronic databases. Inclusion criteria comprised qualitative and mixed-methods studies describing experiences with self-disclosure in people with any type of dementia. Quality of the included studies was assessed using the Mixed Methods Appraisal Tool. The meta-synthesis was conducted in NVivo using a thematic synthesis approach.

Results: Twenty-eight studies were included. Three analytical themes were generated: 'Concealment', 'Stigma and fear', and 'Taking control', the latter two with subthemes. Findings from this review were corroborated with people with dementia and family carers as part of Patient and Public Involvement meetings. Our findings reveal that while stigma plays a pivotal role, people with dementia can take control of the meaning of their diagnosis through self-disclosure.

Discussion and implications: Self-disclosure is complex and multifaceted. People with dementia, particularly those experiencing stigma, can benefit from post-diagnostic support that encompasses resources and interventions for self-disclosure. Further research is required to investigate people with dementia's disclosure decision-making process.