Experiences of families of people living with frontotemporal dementia: a qualitative systematic review

Abstract

Frontotemporal dementia (FTD) is characterised by atrophy of the frontal and/or temporal lobes. People with FTD show language and emotional disturbances from onset, and communication problems usually affect people with FTD and their families even before diagnosis. These unique characteristics of FTD are not well understood and create substantial problems for people living with FTD and their families. This review explores the experiences of families of people living with FTD. Studies were selected and screened according to the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses guidelines. We searched four bibliographic databases for articles up to February 2021 to identify qualitative data on the experiences of families. The Critical Appraisal Skills Programme checklist for qualitative studies was used to assess all included studies. Of 235 identified articles, we included six studies in the qualitative synthesis. Meta‐ethnography was conducted to interpret families' experiences of people living with FTD. The emergent concepts were synthesised into five themes: Something is wrong with my loved one; No one fully understands; Existential pain of caring for a loved one with FTD; Increased burden owing to specific FTD symptoms; and Forced to adapt to new and unique ways of living with a loved one with FTD. This review highlighted families' confusion and suffering (which began in the early stages of the disease, and sometimes before diagnosis) and the difficulty of communicating with people with FTD. These findings have implications for future practice, as they demonstrate the positive effect on family life of appropriate support that is provided early, rather than after the disease has progressed.