LangCog Seminar - Mirjam Gauch & Prof. Sabine Corsten

Introduction / Background: People with primary progressive aphasia (PPA) experience numerous limitations in everyday life due to their language disorder. A reduction in quality of life often accompanies these limitations. A few studies and field reports indicate that speech therapy can improve quality of life and might help people with PPA to cope with their disease. However, there has been a lack of target group-specific concepts to date. The biographic-narrative approach according to Corsten et al. (2015) has proven to be effective for the treatment of people with stroke-related aphasia. The method enables participants to work on their identity and thus gain access to a more positive self-image. In our current study entitled ‘Cope PPA’, the biographic-narrative approach will be further developed and evaluated for use with people with PPA.

Methods: In the first phase of an adaptive study design, the need for change in the biographic-narrative approach from the perspective of people with PPA will be identified using a focus group interview (n=5). In the second phase, the resulting biographic-narrative intervention ‘Cope PPA’, consisting of five individual and seven group therapies, will be evaluated within an efficacy study. 24 people will be allocated to therapy and waiting groups using block randomisation. The primary endpoint, quality of life, will be assessed using the Stroke and Aphasia Quality of Life Scale-39 (Hilari et al., 2009) and further analysed using semi-structured interviews. Secondary endpoints are depressive symptoms, life satisfaction, and cognitive/communicative functions.

Results: All participants in the focus group interview gave extensive feedback on the topics and methods of the biographic-narrative approach as well as on the use of additional materials such as memory boxes and reflection pictures. A first cohort (n = 6) of the efficacy study has already been completed at this point, thus proving the feasibility of the concept. There were initial indications of improvements in the mood and activity of the participants and of identity work taking place.

Discussion: The focus group interview was useful in identifying the need to adapt the biographic-narrative approach for people with PPA. Initial data from the efficacy study indicate that people with PPA can participate in and benefit from Cope PPA. We therefore hope to be able to contribute to improving the care situation.

Learning Aims: As a result of the seminar, participants will learn about the definition of narrative identity and its connection with well-being and about using life storytelling to approach well-being in people with aphasia and people with PPA.