Emotions of family caregivers of individuals with young-onset dementia when seeking support in the early stages after diagnosis

Abstract

Objectives　Family caregivers of individuals with young-onset dementia (YOD) often struggle to seek help, despite the heavy burden of care. This study explored their feelings when attempting to find support in the early stages after diagnosis.

Methods　This qualitative descriptive study conducted semi-structured interviews with eight family caregivers of patients with YOD at home. The analysis extracted and coded passages related to feelings in situations in which family caregivers sought support. By comparing and examining the meanings of the codes, we identified broader themes and developed categories iteratively.

Results　In the early stages after diagnosis, family caregivers were concerned about “fear and anxiety about developing dementia at a young age,” “desire for any information about YOD,” “desire to continue currently as long as possible for the future,” “desire to protect the dignity of the individual with YOD as a member of society,” “hesitation to tell others that he/she has YOD,” and “desire to protect their life, mind, and body, which is still in the mid-life.” These concerns prompted them to seek the support of others.

Conclusion　Family caregivers demonstrated earnest wishes for patients with YOD and themselves in the early stages after diagnosis. They dealt with unique YOD-related struggles, including prejudice, the impact on others, and personal hesitations. Seeking support helped alleviate negative feelings arising from the diagnosis process. Family support services should prioritize early outreach at diagnosis, proactively identify difficulties, and tailor them to patients and caregivers. The attitude of the support staff, who anticipate daily life challenges and approach the family, can significantly facilitate support-seeking by caregivers.