“I used to be a storyteller”: the perspectives of people with primary progressive aphasia on the communication needs for themselves and their family members

ABSTRACT

Background

Primary progressive aphasia (PPA) refers to a group of neurological disorders characterised by the progressive deterioration of language functions. The primary avenue of support for the wide-ranging impacts of PPA on the lives of people with PPA and their family members is the delivery of communication care from speech-language pathologists. To align the provision of communication care services and the development of communication interventions with the peoples’ and family members’ needs, it is important to understand those needs from the perspectives of key stakeholders, particularly individuals with PPA.

Aims

The aims of the current study were to explore (a) the communication needs of people with PPA in the early and middle stages, and (b) the communication needs of their family members, from the perspectives of people with PPA.

Methods & Procedures

Semi-structured qualitative interviews were conducted with seven people with PPA (all variants of PPA) from one to 96 months post diagnosis. The qualitative data was analysed using qualitative content analysis to identify codes and categories that related to the study’s research aims.

Outcomes & Results

Qualitative content analysis yielded six categories of communication need pertaining to people with PPA: Diagnosis and disclosure; Wanting information for self and the general public; General communication difficulties; Impact on communication in everyday life; Impact on psychosocial wellbeing; and Future planning. In contrast, only one category of need pertaining to family members was identified: Impact on family and others.

Conclusion

This study has yielded a breadth of findings on the communication needs of people with PPA and an initial contribution on those of their family members, implicating a range of health and social care professionals and other system level supports, as well as community members and family and friends, in addition to speech-language pathology services. Speech-language pathologists supporting this population might consider needs in areas such as impact on working life, impact on driving, coping with a changing self-perception of their identity (e.g. as a storyteller), and managing fluctuation in communication abilities. Future research can build on these findings to inform clinical practice and to develop interventions which address the needs of this population.

KEYWORDS:

• Primary progressive aphasia
• needs
• qualitative
• person-centredness

Acknowledgements

This work was supported by the Social Sciences and Humanities Research Council under a Doctoral Fellowship (#6567) awarded to Katharine Davies.

Disclosure statement

No potential conflict of interest was reported by the authors.

Ethical statement

Ethical approval was obtained for this research by the University of British Columbia’s Research Ethics Board (BREB #H22–01109).

Notes

1. Participants in this study were invited to provide their family members with recruitment information for a related study, which investigated the communication needs of individuals with PPA and their family members from the family members’ perspectives (Davies et al., 2024).

Additional information

Funding

This work was supported by the Social Sciences and Humanities Research Council of Canada [Doctoral Fellowship / #6567].