Behind closed doors. A case study exploring the lived experiences of a family of a person with the behavioral variant of frontotemporal dementia

OBJECTIVE: The behavioral variant of frontotemporal dementia is characterized by profound changes in personality and behavior that often start before the age of 65 years. These symptoms impact family life, particularly if (adult) children live at home. In research on young-onset dementia or frontotemporal dementia, the family itself is hardly ever a unit of analysis. Insight in the perspectives of different family members from the same household helps to obtain a deeper understanding of the complex impact of the symptoms on family dynamics. METHODS: This case study explored the perspectives of one family having a relative with the behavioral variant of frontotemporal dementia living at home. Over the course of 4 months, different family members were individually interviewed twice. Two authors independently performed a directed content analysis. RESULTS: The family consisted of a father, mother, and three adult children. Around 3 years before the interviews the father was diagnosed with frontotemporal dementia. The main category identified was the change in family dynamics over the disease trajectory. Three subcategories characterized the changing family dynamics, namely (a) the change in existing roles, relationships and interaction patterns in the family due to early symptoms, (b) a redefinition of roles and responsibility in the family once the diagnosis was established, and (c) the formation of new roles, relationships and interaction patterns in the family by organizing post-diagnostic support at home. CONCLUSION: Symptoms of the behavioral variant of frontotemporal dementia have a complex and profound impact on family dynamics and change existing roles, relationships, and interaction patterns. Psychosocial support may help families by accounting for individual differences in involvement, coping, and bereavement. This may help to create a sense of mutual understanding between family members that could potentially strengthen their relationship. This may help families to deal with the difficult challenge of organizing care for a relative with frontotemporal dementia who lives at home.