A qualitative study on the experiences of family members of individuals diagnosed with young-onset dementia

Objective: The aim of this study is to explore how the lives of family members of individuals diagnosed with young-onset dementia have changed, and to examine in depth their emotions, thoughts, and experiences throughout this process. In the Turkish literature, there is a lack of research focusing on the family members of individuals diagnosed with young-onset dementia. This study seeks to contribute to filling this gap. Method: This study was designed qualitatively. The study included 12 participants who were family members living in the same household as individuals diagnosed with young-onset dementia. Face-to-face interviews were conducted with voluntary participants, and data were collected using a semi-structured interview form. In this research, thematic analysis and content analysis techniques, which are frequently used in qualitative data analysis, were adopted. Results: In this study, it was found that the process of receiving a young-onset dementia diagnosis is challenging, and that it takes a long time for family members to come to terms with the situation following the diagnosis. The most commonly reported emotional response among family members was sadness. Since individuals diagnosed with young-onset dementia had previously played active roles in life, these roles were assumed by family members after the diagnosis, leading to an increase in their responsibilities. It was also observed that the need for information and support regarding the disease increased significantly. Conclusion: A diagnosis of young-onset dementia is a difficult and distressing situation for family members to accept. Young-onset dementia should be regarded not only as an individual health issue but also as a multifaceted condition that affects family structure, roles, and emotional balance. Therefore, it is of great importance to strengthen informative, psychological, and social support systems for family members both during the diagnostic process and thereafter. Key words: Early dementia, qualitative research, living with a dementia patient, family of a dementia patient