People do not navigate neurodegenerative diseases such as Parkinson’s disease (PD) alone. They do so in the context of relationships. In the case of couples, the partner of the person living with PD also “lives with PD,” rendering them an equal and worthy recipient of professional support. Such professional support is best provided in a systemic manner to both partners, understanding that they are traversing the disease together (Constant et al., Reference Constant2021; Hodgson et al., Reference Hodgson, Garcia and Tyndall2004; Millett and Urry, Reference Millett and Urry2019). While this seems an obvious statement, almost a decade ago in a review of family therapy and dementia, Benbow and Sharman (Reference Benbow and Sharman2014) noted the linear focus of research, literature, and clinical practice has been to assist people individually in being “good patients” or “good caregivers.” We dare say that this focus persists, rendering understanding gleaned from empirical research of couples’ relationships in neurodegenerative diseases, such as that by Zhang et al. (Reference Zhang2022), all the more important. Commonalities for a couple traversing PD shared with other neurodegenerative diseases such as dementia include experiences of grief and loss, uncertainty of the future, changing dynamics of the relationship including role distribution and threats to sexual functioning, and altered social participation. Hence, learnings from this paper may have application to other chronic and unpredictably progressive illnesses.
Based on 39 dyads involving one partner with PD, Zhang et al. (Reference Zhang2022) examined the relationship between carers’ coping style (using the Brief Coping Orientation to Problems Experienced Inventory), carer-perceived relationship quality (using the Dyadic Adjustment Scale (DAS)), and carer burden (with the Zarit Burden Interview). Results indicated that problem-focused coping style was predictive of carer burden, while relationship adjustment/satisfaction (total DAS score) and specifically Dyadic Consensus (not other DAS subscales of Dyadic Cohesion, Dyadic Satisfaction, and Affectional Expression) were negatively associated with burden.
Firstly, the finding regarding the burdensome nature of problem-focused caring (importantly the focus being on the burden imposed by a style of caregiving, not by the care recipient) makes intuitive sense. As stated above, although we hold great store in assisting people to be “good caregivers” and “good patients” (Benbow and Sharman, Reference Benbow and Sharman2014) using cognitive-behavioral approaches for patients enhanced by “caregiver participation” (Dobkin et al., Reference Dobkin2012), it is hard to see how linear problem-solving by the caregiver for an “unfixable” problem of a relentlessly degenerative condition will promote couple well-being. Individual problem-focused caring does not do justice to the struggles of couples navigating PD together, as articulated in a theme that emerged from a qualitative study of people with end-stage PD and their partners: “The Adversity Is Not Unbearable, But Going It Alone Would Be” (page 1, Constant et al., Reference Constant2021). Notably, much of the marital work in PD utilizes narrative, solution-focused, and emotionally focused therapies, assisting open and honest communication between the couple about how they are feeling and what they need from each other, in the context of their relationship history (Spencer and Haub, Reference Spencer and Haub2018). Common amongst couples are fears of disease progression and what it will hold, as well as power imbalances that the caregiver-care recipient relationship brings, including perceived uselessness and worthlessness of the person with PD (Ghedin et al., Reference Ghedin, Semi and Caccamo2017; Spencer and Haub, Reference Spencer and Haub2018; Millett and Urry, Reference Millett and Urry2019). Finally, helping the caregiver problem-solve individually will also do nothing to address the broader implications and impact of the disease on the wider family system (Millett and Urry, Reference Millett and Urry2019).
Secondly, the finding of an inverse relationship between carer burden and current relationship adjustment and satisfaction and Dyadic Consensus, as perceived by the carer, may reflect the carers’ frustrated attempts to solve the problems of having a partner with PD, including perhaps a new divergence of opinions, goals, and priorities. The Dyadic Consensus subscale of the DAS measures the degree to which couples agree on matters of importance to the relationship, namely making decisions, time spent together, handling family finances and matters of recreation and leisure, religion, friends, sexuality, correct or proper behavior, philosophy of life, aims and goals, career decisions, and dealing with parents and in-laws. This association of burden with disagreement over such matters speaks further to the need for couples’ approaches.
Just as burden is potentially an emotive word, sometimes carer or caregiver is too. Martin (Reference Martin2016) in a qualitative analysis of interviews with couples living with PD, noted that some participants reported feeling that using the label “caregiver” for a partner failed to fit because, despite the partner with PD having a chronic illness, both partners continued to give care to, and receive care from, each another. Implicitly, intimate relationships require mutual caregiving and while chronic disease upsets the balance of caregiving, part of adjustment to chronic illness relies on acknowledging, responding and adapting to this imbalance and the associated distress, and to continually restore, as best as possible, equitable and mutual caregiving of a sort acceptable to the couple.
The very chronicity of diseases such as PD, with slow unfolding over time as acknowledged by Zhang et al. (Reference Zhang2022), suggests an argument for early intervention with relationship-based support that is dynamic and responsive to the illness. Martire and Helgeson (Reference Martire and Helgeson2017) recommend relationship-based approaches to health and illness management for couples living with long-term illnesses. For couples who appraise the illness as a shared problem, they suggest enhancing relational support and collaboration and minimizing controlling behaviors while maximizing patient autonomy. For couples where one or both partners regard the illness primarily as one partner’s problem, they regard the initial work as changing that appraisal to that of a shared problem and to find common goals. Similarly, Bertschi et al. (Reference Bertschi, Meier and Bodenmann2021), writing about disability as an interpersonal experience, highlight the need to strengthen the “we-perspective” in order to benefit future relational coping. If this is a helpful approach, then there is a good argument for early intervention in progressive conditions, in order to establish collaborative sustainable relational approaches early in the illness that might potentially influence coping over time. Within a systemic approach, some couples might benefit from therapy or counseling: for others, practitioners who are systemically informed may be in a position to offer early helpful interventions (Martin, Reference Martin2016). More simplistically in the absence of formal therapy, medical practitioners treating patients with PD might take a couples’ approach to treatment and support from the outset, recognizing that the target of care and treatment is the couple (or frequently with younger patients, the family) (Martire and Helgeson, Reference Martire and Helgeson2017), not just the person with PD. There is potential for further research in this area.
We currently use the concept of “carer burden” as a proxy for understanding some of the dysphoric aspects of caring, but perhaps this concept merely exacerbates the power imbalance in PD caregiving relationships noted by Zhang et al. (Reference Zhang2022). Burden might be perceived as pejorative of the care recipient. It suggests fault finding and blame. We do not underestimate the pain of caring, which needs to be aired and acknowledged perhaps individually with the caregiver within the context of a broader systemic couples’ approach. Could we otherwise abandon the concept of burden? We advocate for a “we-perspective” not just for PD, but for all chronic illnesses.
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People do not navigate neurodegenerative diseases such as Parkinson’s disease (PD) alone. They do so in the context of relationships. In the case of couples, the partner of the person living with PD also “lives with PD,” rendering them an equal and worthy recipient of professional support. Such professional support is best provided in a systemic manner to both partners, understanding that they are traversing the disease together (Constant et al., Reference Constant2021; Hodgson et al., Reference Hodgson, Garcia and Tyndall2004; Millett and Urry, Reference Millett and Urry2019). While this seems an obvious statement, almost a decade ago in a review of family therapy and dementia, Benbow and Sharman (Reference Benbow and Sharman2014) noted the linear focus of research, literature, and clinical practice has been to assist people individually in being “good patients” or “good caregivers.” We dare say that this focus persists, rendering understanding gleaned from empirical research of couples’ relationships in neurodegenerative diseases, such as that by Zhang et al. (Reference Zhang2022), all the more important. Commonalities for a couple traversing PD shared with other neurodegenerative diseases such as dementia include experiences of grief and loss, uncertainty of the future, changing dynamics of the relationship including role distribution and threats to sexual functioning, and altered social participation. Hence, learnings from this paper may have application to other chronic and unpredictably progressive illnesses.
Based on 39 dyads involving one partner with PD, Zhang et al. (Reference Zhang2022) examined the relationship between carers’ coping style (using the Brief Coping Orientation to Problems Experienced Inventory), carer-perceived relationship quality (using the Dyadic Adjustment Scale (DAS)), and carer burden (with the Zarit Burden Interview). Results indicated that problem-focused coping style was predictive of carer burden, while relationship adjustment/satisfaction (total DAS score) and specifically Dyadic Consensus (not other DAS subscales of Dyadic Cohesion, Dyadic Satisfaction, and Affectional Expression) were negatively associated with burden.
Firstly, the finding regarding the burdensome nature of problem-focused caring (importantly the focus being on the burden imposed by a style of caregiving, not by the care recipient) makes intuitive sense. As stated above, although we hold great store in assisting people to be “good caregivers” and “good patients” (Benbow and Sharman, Reference Benbow and Sharman2014) using cognitive-behavioral approaches for patients enhanced by “caregiver participation” (Dobkin et al., Reference Dobkin2012), it is hard to see how linear problem-solving by the caregiver for an “unfixable” problem of a relentlessly degenerative condition will promote couple well-being. Individual problem-focused caring does not do justice to the struggles of couples navigating PD together, as articulated in a theme that emerged from a qualitative study of people with end-stage PD and their partners: “The Adversity Is Not Unbearable, But Going It Alone Would Be” (page 1, Constant et al., Reference Constant2021). Notably, much of the marital work in PD utilizes narrative, solution-focused, and emotionally focused therapies, assisting open and honest communication between the couple about how they are feeling and what they need from each other, in the context of their relationship history (Spencer and Haub, Reference Spencer and Haub2018). Common amongst couples are fears of disease progression and what it will hold, as well as power imbalances that the caregiver-care recipient relationship brings, including perceived uselessness and worthlessness of the person with PD (Ghedin et al., Reference Ghedin, Semi and Caccamo2017; Spencer and Haub, Reference Spencer and Haub2018; Millett and Urry, Reference Millett and Urry2019). Finally, helping the caregiver problem-solve individually will also do nothing to address the broader implications and impact of the disease on the wider family system (Millett and Urry, Reference Millett and Urry2019).
Secondly, the finding of an inverse relationship between carer burden and current relationship adjustment and satisfaction and Dyadic Consensus, as perceived by the carer, may reflect the carers’ frustrated attempts to solve the problems of having a partner with PD, including perhaps a new divergence of opinions, goals, and priorities. The Dyadic Consensus subscale of the DAS measures the degree to which couples agree on matters of importance to the relationship, namely making decisions, time spent together, handling family finances and matters of recreation and leisure, religion, friends, sexuality, correct or proper behavior, philosophy of life, aims and goals, career decisions, and dealing with parents and in-laws. This association of burden with disagreement over such matters speaks further to the need for couples’ approaches.
Just as burden is potentially an emotive word, sometimes carer or caregiver is too. Martin (Reference Martin2016) in a qualitative analysis of interviews with couples living with PD, noted that some participants reported feeling that using the label “caregiver” for a partner failed to fit because, despite the partner with PD having a chronic illness, both partners continued to give care to, and receive care from, each another. Implicitly, intimate relationships require mutual caregiving and while chronic disease upsets the balance of caregiving, part of adjustment to chronic illness relies on acknowledging, responding and adapting to this imbalance and the associated distress, and to continually restore, as best as possible, equitable and mutual caregiving of a sort acceptable to the couple.
The very chronicity of diseases such as PD, with slow unfolding over time as acknowledged by Zhang et al. (Reference Zhang2022), suggests an argument for early intervention with relationship-based support that is dynamic and responsive to the illness. Martire and Helgeson (Reference Martire and Helgeson2017) recommend relationship-based approaches to health and illness management for couples living with long-term illnesses. For couples who appraise the illness as a shared problem, they suggest enhancing relational support and collaboration and minimizing controlling behaviors while maximizing patient autonomy. For couples where one or both partners regard the illness primarily as one partner’s problem, they regard the initial work as changing that appraisal to that of a shared problem and to find common goals. Similarly, Bertschi et al. (Reference Bertschi, Meier and Bodenmann2021), writing about disability as an interpersonal experience, highlight the need to strengthen the “we-perspective” in order to benefit future relational coping. If this is a helpful approach, then there is a good argument for early intervention in progressive conditions, in order to establish collaborative sustainable relational approaches early in the illness that might potentially influence coping over time. Within a systemic approach, some couples might benefit from therapy or counseling: for others, practitioners who are systemically informed may be in a position to offer early helpful interventions (Martin, Reference Martin2016). More simplistically in the absence of formal therapy, medical practitioners treating patients with PD might take a couples’ approach to treatment and support from the outset, recognizing that the target of care and treatment is the couple (or frequently with younger patients, the family) (Martire and Helgeson, Reference Martire and Helgeson2017), not just the person with PD. There is potential for further research in this area.
We currently use the concept of “carer burden” as a proxy for understanding some of the dysphoric aspects of caring, but perhaps this concept merely exacerbates the power imbalance in PD caregiving relationships noted by Zhang et al. (Reference Zhang2022). Burden might be perceived as pejorative of the care recipient. It suggests fault finding and blame. We do not underestimate the pain of caring, which needs to be aired and acknowledged perhaps individually with the caregiver within the context of a broader systemic couples’ approach. Could we otherwise abandon the concept of burden? We advocate for a “we-perspective” not just for PD, but for all chronic illnesses.
Conflict of interest
None.