Abstract
Introduction:
Caregiver distress is prevalent in Parkinson’s disease (PD) and predictive of negative health outcomes for both people with PD and caregivers. To identify future intervention targets, it is important to better elucidate the specific processes, such as criticism, that perpetuate burden.
Objective:
Evaluate the frequency and impact of criticism and reactivity to criticism in PD caregiving dyads.
Methods:
Eighty-three people with PD and their caregivers independently completed measures of criticism and physical and emotional health.
Results:
Criticism in the caregiving relationship was reported by 71.1% (n = 59) of people with PD and 80.7% (n = 67) of caregivers. Both perceived criticism and emotional reactivity to criticism were significant predictors of caregiver distress, adjusting for PD motor and non-motor symptom severity. In contrast, criticism was not related to PD depression.
Conclusion:
Criticism in the PD caregiving relationship is a clear target for psychotherapeutic intervention and may improve caregiver health and quality of life.
More than 10 million individuals worldwide are affected by Parkinson’s disease (PD), 1 a progressive, debilitating, neurodegenerative disorder characterized by the complex interplay of motor and neuropsychiatric features. Persons with PD (PWP) often have a spouse, family member, or close friend (hereafter referred to as caregiver, or CP) that is intimately involved in their daily routine. In PWP without dementia, estimates show assistance occurring an average of 11 times per day in early PD and up to 30 times per day in later stage disease. 2 The physical and emotional strain (e.g., burden or distress) associated with providing care is well-documented in PD literature and linked not only to a range of negative outcomes for the caregiver,3,4 but also to a poorer prognosis for the individual with PD.5-8
While it is well-established that PD motor and non-motor symptom burden negatively impact caregiver well-being, additional research is needed to further elucidate the discriminant processes that perpetuate or protect against CP distress. For caregivers, PD symptom severity may translate to disruptions to household tasks and routines, 9 social engagements,9-11 and participation in holiday activities. 9 Although reducing or eliminating these challenges is difficult due to the progressive nature of PD, the identification of modifiable factors that may enhance resiliency to better withstand them is critical to the development of novel therapeutic interventions to ameliorate caregiver distress.12,13
Toward this end, communication styles that frequently involve criticism or disapproval within the dyad may be one key factor that warrants closer inspection. Criticism may be an indicator of relationship tension that results from caregiving challenges. Accordingly, preliminary research has revealed the exchange of critical and conflictual messages between PWP and their caregivers, while coping with PD-related motor and neuropsychiatric symptoms, and has found an association between negative feedback in the context of the helping role and caregiver emotional distress.14,15 Although negative interpersonal exchanges with relationship partners may occur less frequently than positive, supportive interactions, their impact on emotional well-being is significant. 16 In fact, the adverse effects of negative social interactions have been shown to outweigh the beneficial effects of positive exchanges on mood and quality of life.17-19 Criticism, for example, has been well-studied in the mental health literature, has been conceptualized as an indicator of relationship tension, and has been shown to predict a range of negative psychiatric outcomes (e.g., depressive relapse, length of mood episodes).20-24
To identify future intervention targets, this study examined the frequency and impact of criticism within the caregiving relationship for individuals with co-morbid clinical diagnoses of Parkinson’s disease and depression. As neuropsychiatric symptoms are among the strongest predictors of caregiver distress, 3 a depressed sample provides an enriched opportunity to study key processes that prevent or perpetuate strain in PD caregiving relationships. We hypothesized that criticism would be 1) reported by the majority of PD-caregivers dyads; and 2) significantly associated with high levels of caregiver distress and PWP depression, independent of other known contributors. The relationship between criticism and PD physical health indices was also explored.
Methods
Overview
Participants were recruited as part of a randomized controlled trial examining a telehealth intervention for depression in PD. 25 The current study focused on baseline data for the subset of participants who enrolled with a caregiver (83 out of 90 Veterans). Please refer to the consort diagram in the primary publication for additional details related to the recruitment pipeline. 25
Participants
Participants were male PWP who had depression (n = 83) and were recruited from the Veterans Health Administration (VHA), along with their mostly female caregivers (n = 83). Caregivers included individuals who provided emotional and/or physical support to the veteran though daily or near-daily contact, namely spouses, family members, or friends. PWP inclusion criteria were: 1) confirmed PD diagnosis in the VHA medical record; 2) primary major depressive disorder, persistent depressive disorder, or specified/unspecified depressive disorder; 3) ages 35-85; 4) caregiver available to participate; 5) stable medication regimen for >6 weeks; 6) access to high-speed internet. Veterans were excluded if they had: 1) probable dementia or marked cognitive impairment (Montreal Cognitive Assessment [MoCA] 26 score < 21) 27 ; 2) acute suicidal plans or intent (per clinical interview); 3) unstable medical conditions (e.g., cancer); and/or 4) bipolar, psychotic spectrum, or active substance use disorders. Caregiver inclusion criteria were: 1) supportive contact with the Veteran near-daily at minimum; 2) ages of 25-85; and 3) medically and psychiatrically stable (per interview).
Procedures
Participants were recruited from September 2016-January 2019. All study procedures were conducted remotely. Recruitment focused on screening for depression among Veterans diagnosed with PD. Prospective participants were identified via VHA electronic administrative data according to whether they had a visit with a PD diagnosis, in addition to provider referral. These candidates received a study information letter, followed by a telephone call. Interested candidates were then telephone-screened for basic eligibility. After providing verbal informed consent, qualifying individuals were scheduled for an initial evaluation. All study procedures were reviewed by the facility Institutional Review Board (Protocol #01365).
DSM-5 psychiatric diagnoses for PWP were established via the Structured Clinical Interview for DSM-5 Disorders (SCID-5). 28 A complete demographic, medical, and psychiatric history was collected and clinician rated scales were administered. Caregiver interviews were scheduled separately and focused primarily on identifying acute mental health or medical issues that would exclude participation (e.g., recent medical/psychiatric hospitalization). Initial evaluations ranged from 90-120 minutes for Veterans and 5-10 minutes for caregivers. Self-report measures were then completed and returned by mail.
Measures
Criticism
Criticism within the dyad was assessed with the Perceived Criticism Scale (PCS), 21 which contains 4 items. The first 2 items assessed perceived criticism (How critical do you think you are of your family member?; How critical do you think your family member is of you?). The second 2 items assessed emotional reactivity to criticism (When your family member criticizes you, how upset do you get?; When you criticize your family member, how upset does he/she get?). Each item was rated on a 1-10 Likert scale, with 10 indicating the greatest level of severity.
The PWP and caregiver each independently completed the PCS to rate their experience of criticism within their relationship during the past 2 weeks, thereby capturing the perspective of each member of the dyad. For example, a rating on the degree to which the CP became upset when criticized by the PWP was derived from the perspective of both the PWP and the caregiver. The PCS has established test-retest reliability, as well as concurrent and predictive validity.21,22
Depression
Depression severity for PWP was evaluated with the Hamilton Depression Rating Scale (HAMD) in PWP. 29 This 17-item, clinician-rated, scale is among the few measures validated for assessing depression in PD. Scores range from 0-48, with higher scores reflecting more severe symptomatology. Per National Institutes of Health (NIH) guidelines, 30 inclusive scoring criteria were applied to potentially overlapping symptoms between PD and depression (e.g., fatigue, psychomotor slowing), such that all endorsed symptoms counted toward the depression total score.
Caregiver distress
The Caregiver Distress Scale (CDS) 31 is a 17-item measure assesses 5 core domains of caregiving stress: relationship distress, emotional burden, social impact, care-receiver demands, and personal cost. Items are scored on a 5-point Likert scale (0-4) and summed to create a total distress score (0-68), with higher values reflecting greater distress. Psychometric data supports construct validity and test-retest reliability. 31
Physical health indices
PD duration
Number of years with a PD diagnosis was derived from the intake interview, as a gross indicator of disease progression and/or the cumulative time that dyads have been coping with PD related challenges.
Medical comorbidity
Number of comorbid medical conditions for the PWP was also derived from the intake interview.
Physical limitations
PWPs also completed the Medical Outcomes Physical Functioning scale (PF-10), which is a subscale of the 36-Item Short Form Survey (SF-36). 32 The PF-10 assesses the degree to which physical limitations impact daily activities, such as dressing, climbing one flight of stairs, and lifting or bending. Scores range from 0 to 100, with higher values reflecting fewer limitations. The PF-10 is a well-established measure that has received ample support for its psychometric properties. 33
Analyses
To derive frequencies of the occurrence of critical exchanges within the dyad (Aim 1), each PCS item was dichotomized to indicate either the presence or absence of each element of criticism, from the independent perspective of the PWP and caregiver. Based on previous research, 34 “presence” was defined as a PCS item rated ≥ 5. The relationship between criticism (i.e., perceived criticism, emotional reactivity to criticism) and other key motor and non-motor challenges faced by the PD dyad (Aim 2) was then examined with a sequence of univariate and multivariate analyses. First, univariate correlations explored the relationship between each element of criticism (PCS continuous score for each item) and measures of depression, caregiver distress and physical health. This was followed by multiple regression models that examined the extent to which each of the 4 elements of criticism (PCS continuous score for each item) was related to caregiver distress (4 separate models; one model per PCS item) and PWP depression (4 separate models; one model per PCS item), while adjusting for covariates. Each model included the criticism element as rated from the perspective of each informant. Covariates included age of the participant with PD, PD duration, physical limitations (PF-10), number of comorbid medical conditions, and relationship of the CP to the PWP (e.g., spouse/partner). In addition, PWP models covaried for caregiver distress (CDS) while caregiver models adjusted for PWP depression (HAMD). Interpretation of each model began with determining whether the overall model explained significant variance in PWP depression or caregiver distress. If significant, we evaluated whether each specific element of criticism significantly contributed to the model, adjusting for all relevant covariates. Since the current study is based on secondary analysis of baseline data from a randomized controlled trial, sample size estimates were derived to support the RCT’s primary analyses. 25
Results
Rates and Impact of Criticism
Tables 1 and 2 summarize demographic and clinical characteristics of the PWP and their CP. The majority of PWP (n = 73, 88%) had major depressive disorder, with the remaining having other specified depressive (n = 8, 10%) and persistent depressive disorder (n = 2, 2%). Depressive symptom severity scores were in the moderate range. The average duration of PD was 5 years, and physical functioning was significantly impacted across activities of daily living (M = 42.17, SD = 24.03). Caregivers (Table 2) were mostly spouses/partners 65 (79.3%), with the average length of relationship with the PWP being over years.
Veteran Demographic and Clinical Characteristics (N = 83).
Abbreviations: MDD, Major Depressive Disorder; PDD, Persistent Depressive Disorder; PD, Parkinson’s disease; HAMD, Hamilton Depression Rating Scale; HS, High School.
Caregiver Characteristics.
Abbreviations: HS, High School; CDS, Caregiver Distress Scale; M, Mean; SD, Standard Deviation.
Table 3 summarizes the presence of each element of criticism from the perspective of each member of the dyad. Each unique component of criticism was experienced by at least a third of participants, regardless of which informant (PWP or CP) reported the experience. Presence of at least one of the 4 elements was observed for 71.1% (n = 59) of PWP and 80.7% (n = 67) of caregivers.
Frequency of Criticism Difficulties Within the PD Caregiving Dyad.
Abbreviations: PWP, Person with Parkinson’s disease; CP, Caregiver.
* Defined as ≥ 5 on at least 1 of the 4 criticism difficulties.
High levels defined as ≥ 5 on a scale of 1-10.
There was moderate agreement between PWP and CP with respect to each element of criticism within the relationship: 1) PWP being critical (r = .38, p = .001); 2) caregiver being critical (r = .29, p = .009); 3) PWP feeling upset by caregiver criticism (r = .39; p < .001); and 4) caregiver feeling upset by PWP criticism (r = .30, p = .006). Univariate analyses examining the relationship between these criticism elements and dyadic physical and emotional outcomes are summarized in Table 4. All components of criticism were significantly related to CP distress, regardless of which member of the dyad provided data. In contrast, PWP depression was significantly related only to the level of criticism they directed toward their caregiver and only as seen from the PWP perspective (r = .27, p = .016). No other significant relationships emerged.
Univariate Correlations Between Elements of Criticism and Dyadic Outcomes.
Abbreviations: PWP, Person with Parkinson’s disease; CP, caregiver; PD, Parkinson’s disease.
a Boldface values indicates p < .05.
Criticism and caregiver distress
Multivariate models (Table 5) examining caregiver distress showed significant overall effects for perceived criticism of the CP by the PWP (Model 1; F[8, 71] = 7.10, p < .001) and for the perceived caregiver criticism of the PWP (Model 2; F[8,72] = 8.47, p < .001). Model 1 showed that perceived criticism of the CP by the PWP was independently and significantly related to caregiver distress, but only as reported by the caregiver (p < .001). Model 1 had an overall R-squared of .44 and the addition of the criticism variables accounted for an R-squared change of .18 (p < .001). Model 2 showed that perceived caregiver criticism of the PWP was significantly related to caregiver distress, regardless of whether reported by the PWP (p = .014) or the caregiver (p < .001). The R-squared for Model 2 was .49 and the addition of the criticism variables accounted for an R-squared change of .22 (p < .001).
The Impact of Perceived Criticism on Caregiver Distress.
Abbreviations: PWP, Person with Parkinson’s disease; CP, Caregiver; SE, Standard Error; PD, Parkinson’s disease.
Model 1: R2 = .44 (R2 change = .18, p < 0001).
Model 2: R2 = .49 (R2 change = .22, p < .0001).
Similarly, models (Table 6) examining PWP emotional reactivity to caregiver criticism (Model 3; F[8,73] = 7.44, p < .001), and CP emotional reactivity to PWP criticism (Model 4; F[8,72] = 6.67, p < .001), showed significant overall effects on caregiver distress. Model 3 showed that PWP reactivity to caregiver criticism was significantly and independently related to caregiver distress, regardless of whether reported by CP (p = .004) or PWP (p = .014). Model 3 resulted in an R-squared of .45, and the variables assessing the PWP emotional reaction to CP criticism accounted for an R-squared change of .18 (p < .001). Model 4 showed that the CP emotional reactivity to PWP criticism was also significantly and independently related to caregiver distress, regardless of whether reported by PWP (p = .037) or caregiver (p = .002). With an overall R-squared of .43, the addition of the “emotional reactivity to criticism variables” accounted for an R-squared change of .16 (p < .001).
The Impact of Emotional Reactivity to Criticism on Caregiver Distress.
Abbreviations: PWP, Person with Parkinson’s disease; CP, Caregiver; SE, Standard Error; PD, Parkinson’s disease.
Model 3: R2 = .45 (R2 change = .18, p < 0001).
Model 4: R2 = .43 (R2 change = .16, p < .0001).
Criticism and PWP depression
Multivariate models examined the effects of each criticism element on PWP depression (HAMD). No significant overall effects were observed for the models focusing on PWP depression in relation to the perceived criticism of the CP by the PWP (F[8,71] = 1.36, p = .23, R2 = .13) or the perceived caregiver criticism of the PWP (F[8,72] = 1.22, p = .30, R2 = .12). Similarly, significant overall effects on PWP depression were not observed for models examining PWP emotional reactivity to caregiver criticism (F[8,73] = 1.18, p = .32, R2 = .12) or CP emotional reactivity to PWP criticism (F[8,72] = 1.72, p = .11, R2 = .16).
Discussion
The current study examined the role of criticism in PD caregiving dyads. Findings showed that over two-thirds of PWP and over 3-quarters of caregivers reported perceived criticism and/or emotional reactivity to criticism within the caregiving relationship, making these negative social exchanges a frequently occurring phenomenon within PD dyads. Not only were these experiences found to be prevalent, but results suggest that each unique element of criticism was significantly associated with caregiver distress, even when controlling for other key clinical and demographic variables. Notably, no aspect of criticism was related to PWPs’ depression severity (in multivariate analyses) or to PWP self-reported functional impairment. Moreover, findings were largely consistent irrespective of which member of the dyad reported the experience of criticism, suggesting that results were not an artifact of a singular perspective.
These data are important for enhancing our understanding of the processes related to the onset and maintenance of caregiver distress in PD. It is well-established that burden or distress is related to a range of negative outcomes for both the caregiver and the PWP. 14 While studies have increasingly pointed to the relatively greater role that PWP psychiatric and behavioral symptoms have on caregiver distress, relative to motor severity, little is known about the specific mechanisms which contribute to this robust link. 35 The current findings add to this body of research by showing that criticism is an important factor that contributes to caregiver distress in a PD sample with depression and may be one pathway by which the challenges associated with managing PD neuropsychiatric symptoms lead to caregiver distress. While other clinical variables such as physical limitations and medical comorbidity were also significant predictors of CP distress in multivariate models, critical communication explained unique variance in caregiver distress above and beyond that which could be explained by standard indices of physical disability, highlighting the importance of this construct for further study. Moreover, given the weak relationship observed between critical communication and physical impairment in this depressed sample, it is possible that perceived criticism is more frequently experienced in the context of social and emotional (vs. physical) role function.
There are several plausible mechanisms by which criticism relates to caregiver distress. Results suggest that criticism may, both, contribute to and result from caregiver distress. Findings showing greater CP distress associated with the receipt of criticism from the PWP suggests that criticism from the PWP in the context of the helping role may contribute to heightened levels of caregiver emotional distress. This is consistent with findings reported in PD qualitative research, in which being the recipient of the PWP’s frustration was described as a key caregiving challenge. 15 On the other hand, greater caregiver expression of criticism, as well as CP emotional reactivity to criticism, may stem from the caregiver’s own emotional distress. In these instances, heighted CP distress may result in the provision of critical and impulsive feedback to PWP, consistent with previous research.14,15 Taken together, it may be that a bidirectional pattern occurs, where critical interpersonal exchanges and caregiver distress reciprocally perpetuate each other, a pattern that is broadly consistent with findings within dementia caregiving dyads. 36 Future research should examine the directionality of these patterns.
In addition, depressive symptoms may negatively impact (and be impacted by) one’s interpersonal exchanges, thereby increasing the likelihood of criticism and emotional distress in relationships in which one or both members of the dyad has a mood disorder.22,37-41 Conversely, there is strong evidence for the association between supportive relationships and lower symptom severity, better recovery and remission rates, and better functional outcomes at follow-up among individuals with depression.42-45 Thus, the importance of better understanding patterns of critical exchanges between individuals with comorbid PD and depression and their CPs is particularly salient.
A key implication of the current results is that future interventions may ameliorate CP distress via the direct targeting communication skills with the dyad. A range of behavior therapy and couples-based interventions have been found to produce positive change in communication content and approach,46,47 including in populations who have chronic diseases. 48 Therefore, a potentially fruitful line of future research may be on the greater targeting of communication skills in both caregiver and dyadic interventions, as well as the systematic examination of communication-based outcomes. Techniques such as role-playing, rehearsal with feedback, and assertiveness training may prove especially beneficial. 49
A final issue worth noting pertains to the type of relationship between the caregiver and care recipient, which has also been explored in past work, with mixed results. For example, while some reports indicate no difference in overall burden between adult child versus spousal caregivers, 50 others report that spousal caregivers experience greater burden and distress than adult child caregivers.43,51,52 Potential explanations include the salience of the marital relationship, emotional distress associated with the potential loss of a spouse, and greater reluctance in seeking community and outside services and assistance with care.53,54
The current study has several limitations worth noting. First, the data are cross-sectional, which limits the causal inferences that can be made. However, the associations between criticism and caregiver distress were generally similar regardless of the informant. As a result, it is less likely that effects were due to caregiver perceptions being influenced solely by their own personal emotional state. Second, unlike previous research which cites neuropsychiatric complications as the most significant driver of CP burden, 4 the current study did not find a relationship between CP distress and PWP depression. This is likely due to the fact that the current sample did not include non-depressed PWP and therefore had limited variability in HAMD scores. Third, while the current study did measure self-reported physical disability, the neurologist rated Unified Parkinson’s Disease Rating Scale (UPDRS), was not utilized as an index of motor severity, which may limit comparability of results across studies. Fourth, all PWP in the current study were male Veterans with female caregivers. This gender breakdown is relevant to the interpretation of current findings as gender may influence caregiving roles within caregiving dyads. 55 Fifth, results may not generalize to caregivers of those with PD-related dementia. Finally, criticism is only one aspect of communication and future research should examine other aspects, such as supportive statements, in order to gain a broader understanding of communication patterns and caregiving distress.
In summary, PD challenges tax even the healthiest relationships, such as those with high levels of relationship satisfaction. Therefore, it is important to identify risk factors for caregiver distress that may be amenable to intervention. Results suggest that criticism within the dyad may provide one such target. Study findings underscore the need for the incorporation of communication strategies into caregiver-specific, as well as dyadic, psychotherapeutic interventions. Doing so may offer enhanced protection against caregiver distress and boost overall resiliency within PD caregiving dyads.
Footnotes
Acknowledgments
This material is the result of work supported with resources and the use of facilities at the VA New Jersey Healthcare System. The contents of this article do not represent the views of the U.S. Department of Veterans Affairs or the United States Government.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was supported by a grant from the U.S. Department of Veterans Affairs, Health Services Research and Development Service (IIR 14-353).
