“What do you need to talk about your life?”: insights from people with primary progressive aphasia on biographic-narrative therapy

Abstract

Background: People with Primary Progressive Aphasia (PwPPA) often experience a negative self-image and a reduced quality of life (QoL). In contrast to the extant research focused on people with post-stroke aphasia, there is a lack of evidence-based therapies for PwPPA that demonstrate clear improvements in QoL. In the Cope PPA study, the biographic-narrative therapy narraktiv, which has shown efficacy in improving the QoL in people with post-stroke aphasia, was discussed in a focus group interview with PwPPA. This paper presents the qualitative findings from that focus group, which informed the subsequent adaptation of the Cope PPA manual. Aims: It is the objective of the Cope PPA study to prove the transferability of the biographic-narrative therapy to the treatment of PwPPA and to evaluate its effects on the QoL of this target group. Methods & Procedures: Five PwPPA were recruited. The inclusion criteria comprised a PPA diagnosis, the ability to give informed consent, and sufficient visual and auditory abilities. The exclusion criteria were defined as severe depressive symptoms (MADRS > 35) or pronounced cognitive deficits (MMSE < 10). The focus group interview was initiated by researchers from the memory outpatient clinic at the Department of Psychiatry and Psychotherapy of the University Medical Center (Mainz) and took place in the same institution’s rooms. The Cope PPA study was presented to the participants as a planned intervention. PwPPA were asked to provide feedback on the intervention’s conditions and content, as well as to identify any necessary changes and adaptations. Topics, methods and materials of biographic-narrative therapy were presented through visualisations or tangible objects and discussed. The focus group interview lasted 120 minutes, was videotaped, and analysed by using a systematic qualitative content analysis approach. Outcomes & Results: Participants gave detailed feedback. The combined therapy of individual and group sessions was rated positively by PwPPA, though preferences for the specific settings varied among the group. Participants were open to methods from art or music therapy and had different preferences for the use of memory boxes or life story books. The participants emphasised that the therapy should be “challenging” and should focus on the interests of the individual person. Conclusions: PwPPA considered biographic-narrative therapy to be useful and delineated the requirements for the Cope PPA study. This work provides insights from PwPPA into non-pharmacological interventions, offering a new perspective on the development of future therapies.