Family carers’ narratives of the financial consequences of young onset dementia

Abstract

Individuals with young onset dementia and their families face unique challenges, such as disruptions to their life cycle and relationships and a dearth of appropriate supports. Financial consequences have also been noted in the literature yet have not been explored in-depth. The purpose of this research was to qualitatively explore carers’ experiences of financial consequences resulting from the young onset dementia of a family member and how these consequences may be managed. Eight carers (7 women and 1 man) provided a written online narrative about their journey with young onset dementia and any financial consequences experienced, with open-ended prompts to elicit details not yet shared. Narratives were inductively coded and analyzed using a thematic narrative approach. Carers described a voluntary or involuntary end to employment for the person with young onset dementia around the time of diagnosis. This engendered ongoing and anticipated financial consequences, combined with the need for carers to balance employment with the provision of care (which often meant early retirement for spousal carers). Common themes were tension between the needs to provide care and earn income, altered financial prospects, costs of care, and lack of available and accessible supports to ameliorate financial consequences. Findings illustrate the reality of financial consequences across the trajectory of young onset dementia. These consequences may manifest differently for spousal and child carers and are not being adequately addressed by existing supports.