An exploratory case series on patients with the phenocopy syndrome of frontotemporal dementia and their partners: leads for future research

The phenocopy syndrome of behavioural variant frontotemporal dementia (phFTD) refers to patients exhibiting clinical features of the behavioural variant of frontotemporal dementia (bvFTD), but lacking objective functional decline and neuroimaging abnormalities consistent with bvFTD. Although symptoms do not progress into dementia, they are disruptive and cause long-term family dysfunction. This case study aims to explore the social, biographical and demographic features of 8 patients with phFTD and their partners. The feasibility and subjective experience of a support group were explored. Eight phFTD patients and their partners completed self-report questionnaires assessing quality of life, family functioning, and coping styles. Most phFTD patients had some psychological vulnerability or reported a positive family history for psychiatric disorders. All couples showed challenges within family functioning and low quality of life (QOL) in both patients and their spouses. PhFTD patients predominantly utilized passive coping strategies whereas their partners tended to employ more active coping strategies. Our explorative study supports the hypothesis of a multifactorial biopsychosocial vulnerability in phFTD patients. In contrast to bvFTD patients, phFTD patients selfreport low quality of life. The discrepancy in coping styles between patients and their partners possibly contributes to the heavy impact on expressed burden.