The communication needs of people with primary progressive aphasia and their family: a scoping review

Language-led dementias, collectively called primary progressive aphasia (PPA), are caused by relatively focal damage to the language networks of the brain. The progressive language decline of PPA is associated with negative effects on quality of life; depression, hopelessness, and grief; and higher levels of economic burden for the individuals and their families. Although communication impairments are the primary symptoms at onset, people with PPA often receive minimal to no support for their communication needs. This scoping review aimed to explore what is currently known within the existing peer-reviewed research literature about the communication needs of people with PPA and their family members, from the perspectives of people with PPA, their family, and speech-language pathologists. A secondary aim was to identify the research approaches used in the included studies. Four databases were searched. Twelve articles met the inclusion criteria. Analysis of the eligible studies revealed eight broad areas of communication need for people with PPA: Language; Social communication; Everyday communication; Conversation; Social connection; Communication with people other than the family member; Support and coping with communication difficulties; and Education and information. The latter five areas were also identified for family members: Conversation; Social connection; Communication with people other than the family member; Support and coping with the communication difficulties of the person with PPA; and Education and information. The findings provide an initial overview of communication needs for this population and point to key avenues for future research in this area.