A spouse's perspective on communication breakdowns and supportive strategies for semantic variant primary progressive aphasia.

BACKGROUND

The language symptomology in semantic variant primary progressive aphasia (svPPA), namely word finding difficulties with loss of word meaning, leads to multimodal communication difficulties that can be detrimental to establishing and maintaining relationships, including those with spouses.

AIMS

This study describes a spouse's experiences of communicating with an individual with svPPA, the role of communication supports, and expectations for speech-language therapy.

METHOD

A semi-structured interview was conducted with the spouse of an individual with svPPA and analyzed using thematic analysis.

RESULTS

Four themes emerged, including: living with an individual with svPPA, communication supports, and spouse's expectations from speech therapy. The spouse describes a personal dictionary created by the individual with svPPA to manage loss of word meaning. With the progression of the disease to affect all modalities of communication, the different communication supports including the personal dictionary required various modification until there was no longer benefit. Despite the emotional challenges, this spouse demonstrates resilience by making adjustments and accommodations to support their participation in the activities that they had mutually enjoyed prior to the progression of the disease.

CONCLUSION

The study highlights the challenges faced by a spouse of an individual with svPPA, the benefit of communication supports in maintaining interaction despite the progression of symptoms, and the role of speech-language pathology and the community in enhancing care partner well-being.