BACKGROUND:
Frontotemporal dementia (FTD) has a genetic cause in 20% of cases, knowledge of which can affect a person’s mental health. Commonly, the General Anxiety Disorder 7 (GAD-7) and Patient Health Questionnaire 9 (PHQ-9) are used to assess anxiety and depression, however there is evidence that the Warwick-Edinburgh Mental Health Wellbeing Scale (WEMWBS) could be a more sensitive and comprehensive alternative. This study explores how genetic status and awareness of that status affect mental health in people at risk of FTD and evaluates which questionnaire best captures these differences.
METHODS:
Using data from the Genetic Frontotemporal Dementia Initiative (GENFI), depression, anxiety and general wellbeing scores were analysed in symptomatic carriers of pathogenic FTD mutations and an at-risk cohort (presymptomatic mutation carriers and non-carriers) using the GAD-7, PHQ-9 and WEMWBS test. The at-risk cohort was further classified as either aware or unaware of their genetic status. Data (n = 705) was analysed using descriptive statistics and Wilcoxon tests to assess group differences and the effects of both genetic status and awareness.
RESULTS:
Symptomatic carriers showed significantly lower wellbeing (-3.9 WEMWBS points, p = 0.021) and higher depression scores (+2.7 PHQ-9 points, p = 0.021) than non-carriers. In the at-risk cohort, non-carriers who were aware of their genetic status reported higher wellbeing (+2.8 WEMWBS points, p = 0.026) compared with those unaware, with no significant differences in anxiety or depression scores. In contrast, knowledge of genetic status did not improve wellbeing in presymptomatic mutation carriers.
CONCLUSION:
Awareness of a positive FTD genetic status and symptom onset is associated with reduced wellbeing and increased depression, whereas awareness among non-carriers improves wellbeing without affecting depression or anxiety. These findings suggest that WEMWBS is a more sensitive tool for detecting subtle changes in mental health than GAD-7 or PHQ-9, particularly in at-risk cohorts and should be used in clinical assessments of mental health changes.