Facing the Challenges of Primary Progressive Aphasia: The Spousal Perspective Purpose Primary progressive aphasia (PPA) is a cognitive–neurodegenerative disorder. Little is known about the personal impact PPA has on those living with this condition, particularly from a spousal perspective. The aim of this qualitative study was to gain an understanding of the personal experiences of spouses living with a partner ... Research Article
Research Article  |   September 19, 2018
Facing the Challenges of Primary Progressive Aphasia: The Spousal Perspective
 
Author Affiliations & Notes
  • Margaret Pozzebon
    La Trobe University, Melbourne, Victoria, Australia
    Royal Melbourne Hospital, Victoria, Australia
  • Jacinta Douglas
    La Trobe University, Melbourne, Victoria, Australia
    Summer Foundation, Melbourne, Victoria, Australia
  • David Ames
    University of Melbourne, Victoria, Australia
  • Disclosure: The authors declared no conflicts of interest with respect to the authorship and/or publication of this article.
    Disclosure: The authors declared no conflicts of interest with respect to the authorship and/or publication of this article. ×
  • Correspondence to Margaret Pozzebon: margaret.pozzebon@mh.org.au
  • Editor-in-Chief: Sean Redmond
    Editor-in-Chief: Sean Redmond×
  • Editor: Carl Coelho
    Editor: Carl Coelho×
Article Information
Special Populations / Older Adults & Aging / Normal Language Processing / Language Disorders / Aphasia / Language / Research Articles
Research Article   |   September 19, 2018
Facing the Challenges of Primary Progressive Aphasia: The Spousal Perspective
Journal of Speech, Language, and Hearing Research, September 2018, Vol. 61, 2292-2312. doi:10.1044/2018_JSLHR-L-17-0492
History: Received December 30, 2017 , Revised April 17, 2018 , Accepted May 22, 2018
 
Journal of Speech, Language, and Hearing Research, September 2018, Vol. 61, 2292-2312. doi:10.1044/2018_JSLHR-L-17-0492
History: Received December 30, 2017; Revised April 17, 2018; Accepted May 22, 2018

Purpose Primary progressive aphasia (PPA) is a cognitive–neurodegenerative disorder. Little is known about the personal impact PPA has on those living with this condition, particularly from a spousal perspective. The aim of this qualitative study was to gain an understanding of the personal experiences of spouses living with a partner diagnosed with variant forms of PPA

Method Thirteen spouses whose partners were diagnosed with PPA participated in 1:1 semistructured, in-depth interviews to explore their lived experiences of this illness. Using a constructivist grounded theory approach, analysis moved through a process of data-driven open and focused coding for the identification of emergent categories, themes, and subthemes that captured the challenges faced by spouses while supporting their partners.

Results A constructivist grounded theory analysis of the interview data revealed an overarching theme of “facing the challenges of PPA” that captured the experience spouses encountered when living with a partner diagnosed with PPA. Four interdependent and overlapping themes that sat within this overarching theme included acknowledging disconnect in the spousal relationship, living the decline, readjusting sense of self, and getting on with living. Each of these core themes revealed how spouses dealt with the ongoing and evolving challenges of PPA, particularly concerning changing relational dynamics with their partner and adjusting their own self-conceptualization.

Conclusions Greater understanding of the spousal experiences of PPA is crucial to the development of intervention to help sustain spouses' emotional and relational connections with their partner.

Acknowledgments
This work was supported by La Trobe University and the Royal Melbourne Hospital Speech Pathology Department, as well as the Mary Elizabeth Watson Fellowship. We thank the participants who made the research possible by generously sharing their stories and time.
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