In September 2024, Gianna Kohl, Wei Qi Koh, Katrina Scior, and Georgina Charlesworth's published a paper exploring how people with young-onset dementia disclose their diagnosis to others and how this self-disclosure evolves over time. They chose an exploratory qualitative approach for their study and used semi-structured interviews with nine participants, analysed through a narrative approach. The participants were between 55 and 69 years old (female = 5; male = 4) and at the time of the study they were diagnosed for one to ten years. Their types of young-onset dementia included Alzheimer’s disease, frontotemporal dementia, posterior cortical atrophy, and vascular dementia. Even though each participant had a unique narrative, there were some similarities between them, the cross-case themes that emerged from the analysis were:
1. “It is just an illness like any other”
2. Changes over time, and
3. Impact of disclosure on interpersonal relationships and support.
Key findings of the paper included the general trend of acceptance of the diagnosis. The participants disclosed it openly, though reactions varied. They talked about how stigmatising responses often led to social withdrawal, while positive reactions encouraged them to further disclose information about their diagnosis. Peer support groups and advocacy activities were crucial in supporting self-disclosure. The researchers concluded that creating dementia-friendly communities and integrating empowerment interventions and peer support into post-diagnostic care to aid self-disclosure and improve the quality of life for individuals with young-onset dementia are essential.
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0310983