The Impact of Aphasia Camp Participation on Quality of Life: A Primary Progressive Aphasia Perspective

Abstract

Individuals with primary progressive aphasia (PPA) and their caregivers are at risk for decreased quality of life (QoL) due to their progressive condition. Aphasia camps are an intervention that can improve QoL, yet individuals with PPA are underrepresented at aphasia camps relative to those with poststroke aphasia. The purpose of this exploratory case study was to examine the effect of participation in aphasia camp on the QoL of a couple impacted by PPA. The Living with Aphasia: Framework for Outcome Measurement (A-FROM) was used to guide a semistructured interview with an individual with PPA and her spouse, both of whom had attended the Alberta Aphasia Camp for 4 years. Conventional content analysis with an inductive approach was used to analyze results. Concepts that emerged from the interview were organized into pre-camp, during, and post-camp categories. Aspects of camp that had an effect on post-camp QoL for this couple with PPA included expanding social connections and introduction to new activities. Personal characteristics exhibited by the couple had an impact on their experience of aphasia camp and how they incorporated their experiences into their everyday lives post-camp. Aphasia camps are a participation-based service approach that can benefit people with aphasia regardless of etiology. A consideration of personal factors of potential campers with PPA, and the provision of PPA-specific resources, is recommended for programs such as aphasia camps that incorporate participants with mixed etiologies.

Experiences of Living With Primary Progressive Aphasia: A Scoping Review of Qualitative Studies

“…This research includes an investigation of the experiences of participating in an aphasia camp for a couple living with PPA. 35 …”

Quality of Life Ratings and Proxy Bias in Primary Progressive Aphasia: Two Sides to the Story?

“…This can be achieved when the person is able to use the instrument, with appropriate scaffolding as required, or, alternatively, responses can be gathered using more open ended case history or interview-style questions on wellbeing. 7,50 Unlike the Bland-Altman plot analysis, which subtracts one rater's total score from the other, the Kappa Coefficient calculation takes into account variability across each item on the QOL-AD, so it is a more sensitive indicator of agreement when a particular dyad is considered individually. The fact that only one of 18 dyads reached moderate agreement, again supports our recommendation that self-and proxy-ratings on the QOL-AD should not be considered interchangeable in PPA.…”

How Evidence-Based Practice (E3BP) Informs Speech-Language Pathology for Primary Progressive Aphasia

“… 63 Family and communication partners can learn to better facilitate successful conversation. 55 , 68 , 69 Not only do participants report positively on many aspects of group intervention but there is additional evidence that these activities improve quality of life and/or confidence. 55 , 66 - 68 As they typically include multiple components concurrently, it remains an open question which of the components of these group interventions contribute most to their positive outcomes.…”