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

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.

WHAT THIS PAPER ADDS

What is already known on this subject

• Impacts on dementia caregivers are well established, including reduced psychological wellbeing and high perceived caregiver burden. However, little is known about the effects of increasingly documented non-language symptoms (behavioural disturbance, emotion recognition impairment) in persons with Primary Progressive Aphasia (PPA), and whether caregiver coping behaviour influences these outcomes.

What this paper adds to the existing knowledge

• This study is the first to investigate the interrelationships between symptom presentation in the person with PPA, caregiver coping behaviours, and caregiver outcomes in PPA subtypes. Our investigations identified the combination of risk factors most strongly predictive of impacted caregiver outcomes, which varied according to PPA subtype. Overall, caregiver burden was most strongly predicted by the person with PPA-focused variables (emotion recognition, behavioural disturbance), while caregiver psychological wellbeing was most strongly predicted by caregivers’ use of dysfunctional coping.

What are the potential or actual clinical implications for this work?

• Our findings inform intervention design, identify targets for psychoeducation, and suggest directions for future research. To best preserve PPA caregivers’ psychological wellbeing, supporting the development of adaptive coping skills appears crucial. Levels of caregiver burden should be monitored especially closely when persons with PPA showcase non-language symptoms, with protective measures such as respite care implemented pre-emptively.