Life with communication changes in Parkinson's disease

Abstract

Background: Acoustic and perceptual changes to speech in Parkinson's disease (PD) have been widely studied. Little empirical evidence exists concerning the individual's own perception of changes, the impact these have on their life and coping strategies to deal with them.

Objective: To establish if, and how, changes in communication impact on the lives of people with PD.

Design: In-depth interviews with qualitative analysis of content.

Setting: Community.

Subjects: Twenty-three men and 14 women with PD.

Methods: Participants were purposively sampled to give a mix of men, women, family circumstances, stage and duration of PD and severity of speech symptoms. Individuals were interviewed at home. Interviews were transcribed. Emergent themes were identified and fed back to participants for confirmation and clarification.

Results: Participants identified changes to voice and articulation. Language changes featured prominently. Four impact themes: (i) interaction with others, (ii) problems with conversations, (iii) feelings about intelligibility and (iv) voice; and four corresponding coping themes (a) helping others understand, (b) managing conversations, (c) monitoring and adjusting and (d) physical strategies emerged. Of main concern was not the nature of speech-voice-language changes, but how these affected self-concept, participation inside and outside the family and family dynamics. Individuals employed a range of fluid coping strategies moving from background withdrawal to foreground striving strategies.

Conclusions: Speech and language changes in PD impact upon individual and family life long before frank impairment of intelligibility is apparent. The role of early referral to speech and language therapy is therefore worthy of detailed investigation.