Perspectives on Living Positively with Primary Progressive Aphasia
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1
Macquarie University, Australia
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2
University of Sydney, Australia
Individuals with primary progressive aphasia (PPA) are living with the realities of aphasia and other communication difficulties, with the additional knowledge that they have incurable neurological disease. As awareness of the communicative challenges and behavioural treatment options for PPA increases, so should our understanding of the personal impacts of living with the condition. Despite the devastating diagnosis, some individuals with PPA are, anecdotally, inclined to be positive about their situation and engage in more positive behaviours and activities than others, however, to date no studies have empirically investigated this issue. Similar conclusions have been drawn for related but distinct populations such as Alzheimer’s or post-stroke aphasia (Brown et al, 2010; Wolverson et al., 2016). The aim of this study was therefore to use interview and qualitative analysis to explore the lived experience of PPA and self-reported determinants of ‘living positively’ with the condition.
Ten individuals with PPA participated in in-depth, semi-structured interviews about living positively with PPA, lasting approximately one hour. They were between 14 to 48 months post symptom-onset at the time of interview. Interview topics and questions closely mirrored those described by Grohn et al. (2012) for exploring positive living in stroke-aphasia, and covered topics around living positively with PPA and what factors the participants believed led to this. Transcripts were analysed using thematic analysis (Braun & Clarke, 2006) and an inductive approach.
Interview content focussed on communication; “It takes away, for me, um, nouns, I have difficulty with nouns, spelling and maths and they were probably my – were all my life the best subjects”, the challenges of living with PPA; “There was [after diagnosis] a – a really close army friend who just dropped off really which was very sad”, and, how to remain positive despite these; “But, um, and the other thing is that what I ponder on occasionally is that, um, it could have been very much worse”. Thematic analysis is ongoing and themes identified in the data with accompanying statements from individuals with PPA will be presented. Early results indicate that the ability to live positively with PPA may be related to: education about PPA, social, environmental and professional support, meeting others with PPA, philosophical perspective and keeping busy: “I definitely had a positive outlook on it… and a determination to be busy”.
The results from this study will increase awareness of the experience of PPA, and through triangulation with quantitative data on Quality of Life will allow greater understanding of the lived experience of PPA. This will enable health professionals to manage PPA in a holistic way, designing services which can promote positive living and quality of life.
Acknowledgements
This abstract is part of the symposium “Aphasia in neurodegenerative conditions.”
References
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
Brown, K., Worrall, L. E., Davidson, B., & Howe, T. (2010). Snapshots of success: An insider perspective on living successfully with aphasia. Aphasiology, 24(10), 1267–1295. https://doi.org/10.1080/02687031003755429
Grohn, B., Worrall, L. E., Simmons-Mackie, N., & Brown, K. (2012). The first 3-months post-stroke: What facilitates successfully living with aphasia? International Journal of Speech-Language Pathology, 14(4), 390–400. https://doi.org/10.3109/17549507.2012.692813
Wolverson, E. L., Clarke, C., & Moniz-Cook, E. D. (2016). Living positively with dementia: a systematic review and synthesis of the qualitative literature. Aging & Mental Health, 20(7), 676–699. https://doi.org/10.1080/13607863.2015.1052777
Keywords:
Progressive aphasia,
Quality of Life,
Dementia,
Aphasia,
Lived experience
Conference:
Academy of Aphasia 57th Annual Meeting, Macau, Macao, SAR China, 27 Oct - 29 Oct, 2019.
Presentation Type:
Symposium
Topic:
Eligible for student award
Citation:
Ruggero
L,
Nickels
LA and
Croot
K
(2019). Perspectives on Living Positively with Primary Progressive Aphasia.
Front. Hum. Neurosci.
Conference Abstract:
Academy of Aphasia 57th Annual Meeting.
doi: 10.3389/conf.fnhum.2019.01.00043
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Received:
03 May 2019;
Published Online:
09 Oct 2019.
*
Correspondence:
Ms. Leanne Ruggero, Macquarie University, Sydney, Australia, leanne.ruggero@students.mq.edu.au