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Coping with Primary Progressive Aphasia: Factors Predicting Caregiver Psychological Wellbeing and Burden

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Title: Coping with Primary Progressive Aphasia: Factors Predicting Caregiver Psychological Wellbeing and Burden
Language: English
Authors: Johan Wong (ORCID 0009-0004-8492-934X), David Foxe (ORCID 0000-0003-0299-3344), James Carrick (ORCID 0000-0003-1392-8919), Rebekah M. Ahm (ORCID 0000-0001-6996-8317), James R. Burrell (ORCID 0000-0001-9638-2768), Olivier Piguet (ORCID 0000-0002-6696-1440)
Source: International Journal of Language & Communication Disorders. 2025 60(5).
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 11
Publication Date: 2025
Document Type: Journal Articles
Reports - Research
Descriptors: Dementia, Aphasia, Caregivers, Coping, Well Being, Stress Variables, Depression (Psychology), Anxiety, Emotional Response, Symptoms (Individual Disorders), Behavior Problems, Foreign Countries
Geographic Terms: Australia
Assessment and Survey Identifiers: Depression Anxiety and Stress Scales
DOI: 10.1111/1460-6984.70095
ISSN: 1368-2822
1460-6984
Abstract: Background: Impacts of dementia syndromes on caregivers are well established, but research specific to Primary Progressive Aphasia (PPA) populations is scant. In particular, little is known about the impacts of non-language symptoms (e.g., emotion recognition and behavioural disturbance) on caregiver outcomes in PPA. Aims: The present study sought to investigate the interrelationships between non-language symptom profiles, caregiver coping behaviours, and caregiver outcomes (psychological wellbeing and burden) among PPA subtypes. Methods & Procedures: Ninety-six PPA person-caregiver dyads (30 with logopenic variant [lvPPA], 26 with non-fluent variant [nfvPPA], and 40 with semantic variant [svPPA]) and 122 healthy controls were included in this cross-sectional study. Caregiver outcomes were assessed using the Zarit Burden Interview (ZBI) and the 21-item depression, anxiety, and stress scale (DASS-21). The study investigated whether a person with PPA-focused variables (psychological wellbeing, emotion recognition ability, behavioural disturbance) and caregiver coping style predicted caregiver outcomes. Differential caregiver coping styles were also examined. Outcomes & Results: Overall, caregivers most commonly used adaptive coping styles (problem-focused, emotion-focused). Symptom profiles and use of dysfunctional coping correlated negatively with caregiver psychological wellbeing and positively with burden. Regression models indicated that caregiver psychological wellbeing was most strongly predicted by the use of dysfunctional coping strategies, and caregiver burden was most strongly predicted by reduced emotion recognition and presence of behavioural disturbance symptoms in persons with PPA. Conclusions & Implications: This study highlights the importance of considering non-language symptoms in persons diagnosed with PPA and their impact on caregiver outcomes. These findings may inform the development of psychoeducation materials and interventions for PPA caregivers. Further research is needed to identify the predictors of PPA caregiver outcomes with disease progression. Studies utilising qualitative approaches and considering caregiver gain are warranted to understand the experience of PPA caregivers further.
Abstractor: As Provided
Entry Date: 2025
Accession Number: EJ1484134
Database: ERIC
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  Data: Coping with Primary Progressive Aphasia: Factors Predicting Caregiver Psychological Wellbeing and Burden
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  Data: English
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  Data: <searchLink fieldCode="AR" term="%22Johan+Wong%22">Johan Wong</searchLink> (ORCID <externalLink term="https://orcid.org/0009-0004-8492-934X">0009-0004-8492-934X</externalLink>)<br /><searchLink fieldCode="AR" term="%22David+Foxe%22">David Foxe</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-0299-3344">0000-0003-0299-3344</externalLink>)<br /><searchLink fieldCode="AR" term="%22James+Carrick%22">James Carrick</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-1392-8919">0000-0003-1392-8919</externalLink>)<br /><searchLink fieldCode="AR" term="%22Rebekah+M%2E+Ahm%22">Rebekah M. Ahm</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-6996-8317">0000-0001-6996-8317</externalLink>)<br /><searchLink fieldCode="AR" term="%22James+R%2E+Burrell%22">James R. Burrell</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-9638-2768">0000-0001-9638-2768</externalLink>)<br /><searchLink fieldCode="AR" term="%22Olivier+Piguet%22">Olivier Piguet</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-6696-1440">0000-0002-6696-1440</externalLink>)
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  Data: <searchLink fieldCode="SO" term="%22International+Journal+of+Language+%26+Communication+Disorders%22"><i>International Journal of Language & Communication Disorders</i></searchLink>. 2025 60(5).
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  Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
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  Data: Y
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  Data: 11
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  Data: 2025
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  Data: Journal Articles<br />Reports - Research
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  Data: <searchLink fieldCode="DE" term="%22Dementia%22">Dementia</searchLink><br /><searchLink fieldCode="DE" term="%22Aphasia%22">Aphasia</searchLink><br /><searchLink fieldCode="DE" term="%22Caregivers%22">Caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22Coping%22">Coping</searchLink><br /><searchLink fieldCode="DE" term="%22Well+Being%22">Well Being</searchLink><br /><searchLink fieldCode="DE" term="%22Stress+Variables%22">Stress Variables</searchLink><br /><searchLink fieldCode="DE" term="%22Depression+%28Psychology%29%22">Depression (Psychology)</searchLink><br /><searchLink fieldCode="DE" term="%22Anxiety%22">Anxiety</searchLink><br /><searchLink fieldCode="DE" term="%22Emotional+Response%22">Emotional Response</searchLink><br /><searchLink fieldCode="DE" term="%22Symptoms+%28Individual+Disorders%29%22">Symptoms (Individual Disorders)</searchLink><br /><searchLink fieldCode="DE" term="%22Behavior+Problems%22">Behavior Problems</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink>
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  Label: Geographic Terms
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  Data: <searchLink fieldCode="DE" term="%22Australia%22">Australia</searchLink>
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  Label: Assessment and Survey Identifiers
  Group: Su
  Data: <searchLink fieldCode="SU" term="%22Depression+Anxiety+and+Stress+Scales%22">Depression Anxiety and Stress Scales</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1111/1460-6984.70095
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1368-2822<br />1460-6984
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: Impacts of dementia syndromes on caregivers are well established, but research specific to Primary Progressive Aphasia (PPA) populations is scant. In particular, little is known about the impacts of non-language symptoms (e.g., emotion recognition and behavioural disturbance) on caregiver outcomes in PPA. Aims: The present study sought to investigate the interrelationships between non-language symptom profiles, caregiver coping behaviours, and caregiver outcomes (psychological wellbeing and burden) among PPA subtypes. Methods & Procedures: Ninety-six PPA person-caregiver dyads (30 with logopenic variant [lvPPA], 26 with non-fluent variant [nfvPPA], and 40 with semantic variant [svPPA]) and 122 healthy controls were included in this cross-sectional study. Caregiver outcomes were assessed using the Zarit Burden Interview (ZBI) and the 21-item depression, anxiety, and stress scale (DASS-21). The study investigated whether a person with PPA-focused variables (psychological wellbeing, emotion recognition ability, behavioural disturbance) and caregiver coping style predicted caregiver outcomes. Differential caregiver coping styles were also examined. Outcomes & Results: Overall, caregivers most commonly used adaptive coping styles (problem-focused, emotion-focused). Symptom profiles and use of dysfunctional coping correlated negatively with caregiver psychological wellbeing and positively with burden. Regression models indicated that caregiver psychological wellbeing was most strongly predicted by the use of dysfunctional coping strategies, and caregiver burden was most strongly predicted by reduced emotion recognition and presence of behavioural disturbance symptoms in persons with PPA. Conclusions & Implications: This study highlights the importance of considering non-language symptoms in persons diagnosed with PPA and their impact on caregiver outcomes. These findings may inform the development of psychoeducation materials and interventions for PPA caregivers. Further research is needed to identify the predictors of PPA caregiver outcomes with disease progression. Studies utilising qualitative approaches and considering caregiver gain are warranted to understand the experience of PPA caregivers further.
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  Data: 2025
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  Data: EJ1484134
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        Value: 10.1111/1460-6984.70095
    Languages:
      – Text: English
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        PageCount: 11
    Subjects:
      – SubjectFull: Dementia
        Type: general
      – SubjectFull: Aphasia
        Type: general
      – SubjectFull: Caregivers
        Type: general
      – SubjectFull: Coping
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      – SubjectFull: Well Being
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      – SubjectFull: Stress Variables
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      – SubjectFull: Anxiety
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      – SubjectFull: Depression Anxiety and Stress Scales
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              Y: 2025
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