Caring for loved ones with frontotemporal degeneration: the lived experiences of spouses

There is an abundant literature about the experience of caregiving for a spouse living with Alzheimer's disease (AD), but there are very few qualitative studies about caregiving for persons living with Frontotemporal Degeneration (FTD). FTD causes a change in personality and affected persons may lose the ability to adhere to social norms. Thus, the emotional loss caregivers experience is often confounded by anger in response to embarrassing and socially inappropriate behaviors. In this paper, we offer a glimpse of this lived experience through the voices of two spouses whom we interviewed, each with experience caring for persons living with FTD. We suggest that FTD caregivers experience a loss of emotional attachment to their spouse because of their partner's behavioral symptoms. This loss gives rise to feelings of isolation and anger as caregivers assume new roles and reimagine their future. The findings from these interviews illuminate the need for more research and greater attention and support for FTD caregivers early in the disease trajectory.