Flexibly Incorporating the Dyad into Psychosocial Intervention: Considerations for Neuropalliative Care

Abstract

This paper reviews dyadic psychosocial intervention approaches that flexibly incorporate both dyad members despite challenges to equitable involvement due to cognitive limitations or limited availability. We provide an overview, analysis, and examples for the following dyadic intervention approaches: (1) shared interventions that involve each dyad member equitably (i.e., higher care recipient cognition, higher care-partner availability); (2) patient-focused interventions that primarily engage care recipients with early stages of neurocognitive disorders, yet include care-partners in select sessions and target dyadic and relationship needs (i.e., higher care recipient cognition, lower care-partner availability); and (3) care-partner focused interventions that primarily engage care-partners, yet still address care recipient and relationship needs (i.e., lower care recipient cognition, higher care-partner availability). In our review, we propose a flexible definition of dyadic psychosocial intervention that considers the continuum of individuals’ involvement, measurement, content, and conceptual background. We conclude with a discussion of implications for neuropalliative care.

Addressing the psychosocial needs of both patients living with neurological disorders and their care network is a core component of neuropalliative care.¹ Cognitive symptoms are present in many neurological disorders treated in neuropalliative care, and these symptoms can complicate psychosocial approaches to care. Indeed, the presence of cognitive symptoms can heighten the necessity for dyadic approaches to psychosocial care that incorporate the needs of both care recipients and care-partners. Dyadic interventions aim to optimize outcomes within the dyad by holding the health and needs of each member in balance and recognizing the heterogeneity that exists within the dyad.

Mismatched cognition poses a major challenge to psychosocial dyadic intervention unique to many of the dyads receiving neuropalliative care. Further, an increasing rate of care-partners report dual-caregiver roles (e.g., caring for more than one person),² potentially posing barriers to attending psychosocial intervention sessions. Here we highlight the possible range of dyadic interventions to encourage psychosocial-focused neuropalliative care clinicians and investigators to flexibly consider incorporating both dyad members into psychosocial intervention when cognitive symptoms or other challenges (e.g., limited participation from care-partners) are present.

Why are Dyadic Psychosocial Interventions Needed for Neurocognitive Disorders?

The majority of adults living with neurocognitive disorders (NCDs; e.g., Alzheimer’s disease and related dementias, Parkinson’s disease and related disorders [PDs]) reside in the community and are supported by a network of informal care-partners (i.e., preexisting relationship with the care recipient, not through a health system or agency).³ Although care-partners often report positive feelings about caregiving, they also experience substantial psychosocial distress related to the caregiving role and its impact on other life roles and activities.² Care-partners of persons living with NCDs experience anxiety, depression, grief, guilt, and isolation.⁴ Persons living with NCDs also experience significant emotional distress, including anxiety, depression, grief, and isolation.^5,6 As persons living with NCDs and their care-partners navigate illness together, psychosocial needs are often shared between the dyad (i.e., the person with the diagnosis and the care-partner as a single unit).⁷ This notion is supported by a robust literature that suggests emotional distress is transmissible between both members of the dyad (e.g., stress spillover; see Fig. 1 for an example) and that dyadic coping is linked to positive health outcomes.^7–9 Therefore, how dyads manage the shared experience of illness has great bearings on the health of each individual. For this reason, the dementia and palliative care literatures have seen an increasing focus on dyadic research that views psychosocial needs collectively among care recipients and care-partners, rather than individually.^10,11

Fig. 1.

Example of dyadic transmission of emotional distress in context of NCDs. NCD, neurocognitive disorder.

Despite a growing conceptual shift toward a dyadic perspective, the psychosocial intervention literature remains mostly individualized among persons living with NCDs and care-partners.¹² Prevailing psychosocial approaches to care with persons living with NCDs and care-partners similarly focus on providing education, resources, and emotional support for individuals’ unique needs at a particular stage of illness.¹³ Although less commonly implemented in neuropalliative care settings,^14,15 individual psychotherapy interventions, such as cognitive behavioral therapy, have strong evidence for reducing emotional distress among care-partners across stages of illness in the context of NCDs.^16,17 In addition, in early stages, individual psychotherapy interventions, such as cognitive behavioral therapy, are effective for reducing anxiety and depression among persons living with NCDs.¹⁸ Cognitive behavioral therapy works similarly among care-partners and persons with early-stage NCD by helping these individuals decrease the emotional burden of negative thinking patterns as well as increase healthy, enjoyable, and value-congruent behaviors. In middle to late stages of NCDs, psychosocial approaches to care focus more on care-partner-supported behavioral activation and environmental modifications to reduce behavioral indicators of distress among persons living with NCDs.¹⁹

Although many psychosocial intervention approaches are applicable to both individuals, they are rarely delivered to the dyad (i.e., the person with NCD and their care-partner together). This is a missed opportunity because dyadic approaches may be more robust in effect. Indeed, a growing body of research supports the clinical efficacy of dyadic interventions for short- and long-term psychosocial distress as well as health behavior management in the context of chronic and serious illnesses,^20–22 even when compared with individual interventions.^23,24 Further, dyadic interventions may be more economical in terms of treatment costs and time commitment than individual interventions,^25,26 which is particularly important to consider in the context of neuropalliative care, given the limited availability of trained psychosocial providers for this subspecialty.²⁷ Lastly, dyadic interventions present an opportunity to focus on and address shared decision-making, a major aspect of neuropalliative care.²⁸ As coping is interdependent between the person with NCD and the care-partner, there is promise that dyadic interventions may deliver synergistic benefits—meaning the cumulative benefits to both individuals from a dyadic intervention may be greater than the sum of benefits of intervening with each member individually. In sum, dyadic interventions may be optimal for the neuropalliative care setting. The field needs guidelines for dyadic psychosocial interventions in the context of persons with NCD, given that cognitive symptoms have the potential to impact their ability to meaningfully engage with the intervention.

What is a Psychosocial Dyadic Intervention?

Based on Wilson et al’s definition of dyadic research,¹¹ psychosocial interventions are considered dyadic when: (1) both dyad members are included in the intervention and data are collected from both individuals; (2) the intervention targets the dyadic relationship as a vehicle for change in clinical outcome; and (3) the intervention is supported by theory or a conceptual model that provides a rationale for the inclusion of both dyad members. Many existing psychosocial dyadic interventions address dyadic processes (i.e., the various verbal and nonverbal strategies dyads use to manage illness and emotions) and shared appraisals (i.e., cognitive representations of illness meaning, symptomology, course, and prognosis).^24,29–31 These theory-informed interventions seemingly rely on relatively equitable engagement between dyad members. Indeed, many psychosocial dyadic theories and interventions were established with cognitively matched (e.g., cancer, heart disease) spousal dyads.^32,33

The historical context of psychosocial dyadic theory and intervention has the potential to create rigidity among investigators, fueling the belief that dyadic psychosocial intervention must include equitable involvement between dyad members. In settings where NCDs are common, such as neuropalliative care, equitable involvement is challenging because dyads often present with mismatched cognitive abilities as well as intergenerational care-partners with competing care roles or other relationship configurations that impact dyadic coping (e.g., spouses with separate serious medical needs).³⁴ Notably, in their definition of dyadic research, Wilson et al acknowledge that the level of involvement of each dyad member exists on a spectrum and psychosocial dyadic interventions may prioritize individual dyad members at times.¹¹ Yet, the field lacks clarity in illustrating how dyadic psychosocial interventions can flexibly vary along this spectrum of individual involvement.

Another challenge to psychosocial dyadic interventions in the context of NCDs is that investigators must collect data from each member of the dyad independently.¹¹ Care-partner proxy ratings of care recipient are often used in psychosocial research in advanced NCDs. However, there are noted validity issues to psychosocial proxy ratings for persons living with NCDs.³⁵ In particular, when a psychosocial intervention is focused on promoting care-partner self-efficacy and relationship satisfaction, this presents a major source of bias for proxy ratings (e.g., care-partners may be less likely to report care recipient distress when their caregiving self-efficacy is higher). Therefore, studies that use proxy ratings do not meet criteria for a psychosocial dyadic intervention. When care recipient self-report measures are not feasible due to severe cognitive impairment, behavioral observations and objective measurement tools (e.g., sensors, wearables), while more cumbersome and time intensive, may need to be used to more accurately represent the person with NCDs’ perspective.

Purpose

As psychosocial dyadic investigators in neuropalliative care and allied fields, we argue that psychosocial dyadic interventions can benefit from flexibly incorporating both dyad members throughout the illness process of NCDs. We present and review three different types of psychosocial dyadic interventions that vary in dyad member involvement (Fig. 2). Although we recognize there are many scenarios that influence the configuration of involvement (e.g., presenting concern related to one dyad member’s trauma history), we focus primarily on two factors: (1) care recipient cognitive abilities and (2) care-partner availability to attend intervention sessions. Of note, even though this paper focuses on NCDs, flexibility in approach can generalize across neurological disorders to accommodate various symptomologies and care network configurations that impact psychosocial needs and intervention delivery.

Fig. 2.

Spectrum of dyad member involvement in psychosocial intervention based on cognition and availability.

Shared Dyadic Interventions

Shared dyadic interventions are consistent with interactional models and theories of dyadic distress and coping (i.e., mutual and transmissible between dyad members).³⁶ In support of these models and theories, a significant body of literature suggests that distress and coping are interdependent among care recipient–care-partner dyads.^8,9,37 Shared dyadic interventions typically include skills for promoting healthy individual coping to prevent transmission of distress as well as communal coping styles, mutual illness management strategies, and communication skills.³⁸ Measurement will often assess proximal (e.g., dysfunctional illness beliefs), distal (e.g., depression), and relational (e.g., relationship satisfaction) outcomes for both dyad members.

Shared dyadic interventions usually require both dyad members to be present and actively engaged in sessions. Therefore, it is likely best used in early stages of NCDs or when there is no more than mild cognitive impairment (MCI) in either dyad member and when both dyad members can attend sessions. A strength of shared dyadic intervention is that it increases the likelihood that both dyad members are engaged in treatment and receive an adequate dose of intervention, which may enhance the clinical effects and sustainability of effects in both dyad members. A weakness is that it requires high participation from both dyad members, which may be challenging. Telehealth and live video techniques may potentially address this challenge by reducing some barriers to attendance for both dyad members.³⁹

Example: Recovering Together

Recovering Together (RT) is a multimodal (i.e., in-person and virtual delivery) psychosocial dyadic intervention rooted in both individual (e.g., mindfulness) and dyadic (e.g., dyadic coping model of illness management) models of distress and coping. RT aims to teach coping skills to enhance resilience in the context of neurological illness in a critical care setting (e.g., poststroke).⁴⁰ The intervention emphasizes early intervention (i.e., initiated during critical care) before psychological symptoms become chronic, consistent with interactional models and theories of dyadic distress and coping (i.e., reduce stress spillover).

RT engages care recipients who exhibit no more than MCI (Mini-Mental State Exam ≥ 24) as well as their informal care-partner in all sessions together. The primary distal outcomes are depression, anxiety, and posttraumatic stress, whereas proximal outcomes include mindfulness and coping, and relational outcomes include dyadic relationship satisfaction; both care recipients and care-partners complete the same measures. The six 30-minute session manualized intervention covered the following topics: coping with the here and now, coping with uncertainty, adjusting to life after hospitalization, navigating changes in interpersonal relationships, adherence to rehabilitation regimens, fear of stroke recurrence, and making meaning out of the experience.⁴¹ The intervention was initially tested with 16 dyads managing stroke in a neurointensive care unit and demonstrated feasibility.⁴² In a single-blind, pilot randomized controlled trial (RCT; n = 58 dyads), RT significantly improved depression and anxiety for both dyad members postintervention, and effects were sustained at a 12-week follow-up compared with an educational control group. Significant improvements were also observed at postintervention in dyadic relationship satisfaction for care recipients as well as coping and mindfulness for both dyad members within the intervention group (n = 29 dyads).⁴⁰

Example: Strive to Thrive

Strive to Thrive (STT) is a shared dyadic self-management program designed to optimize the physical and mental health of adult couples managing PDs. The intervention is rooted in the Theory of Dyadic Illness Management, and primarily targets shared appraisal and illness management collaboration. The intervention consists of 7 weekly workshops, targeting the following topics: chronic condition education and management skills for mood, sleep, and exercise; self-management skills of monitoring, taking action, problem-solving, decision-making, and evaluating results; and PD-specific considerations. STT required both dyad members to be cognitively able and willing to participate in all workshops together. Both members complete measures of the same distal (i.e., depression and physical health), proximal (i.e., self-efficacy and self-management behaviors), and relational (i.e., communication) outcomes; care-partners completed an additional measure of caregiver strain. A pilot waitlist-control trial (n = 39 dyads) found small positive effects for self-efficacy and depressive symptoms for spousal care-partners, specific self-management behaviors (i.e., engagement in aerobic exercise and mental relaxation) for care recipients with PD, and protective buffering (i.e., concealment of worries) for both members of the dyad.⁴³

Care-Partner-Focused Dyadic Interventions

Care-partner-focused dyadic interventions are based on the theoretical and empirical rationale that care-partner self-efficacy, mastery, and psychosocial well-being have bidirectional relationships with care recipient psychosocial health.^44–46 Although these interventions may primarily focus on care-partners, they hold the psychosocial needs of the care recipient central to the intervention content. For example, an intervention may help a care-partner experiencing emotional exhaustion, irritability, and relationship strain develop strategies for individual coping, empathy-building, and pleasant shared activities to promote relationship satisfaction to ultimately improve emotional health among both dyad members. Therefore, a care-partner-focused dyadic interventions differs from an individual care-partner intervention, because it has a core focus on dyadic processes (e.g., shared activities, communication skills) and clinical outcomes for both dyad members (e.g., relationship satisfaction). In the context of research, outcomes should be assessed for both dyad members individually. Care-partner-focused dyadic interventions may also involve care recipients in certain sessions, although this is not required. For example, in the previous example, a care-partner-focused dyadic intervention may include the care recipient in sessions focused on developing a behavioral plan for shared pleasant activities.

Care-partner-focused dyadic interventions often target emotional, cognitive, and behavioral factors that impact the dyadic relationship in the context of illness, such as emotion regulation skills, communication skills, balancing autonomy support, empathy building, and shared behavioral activation.^13,20,47,48 Ultimately, these factors help to optimize the social and physical environment to enhance psychosocial wellness for both dyad members. Measurement will often assess proximal (e.g., caregiver self-efficacy), distal (e.g., caregiver burden), and relational (e.g., dyadic relationship strain) outcomes with care-partners as well as relevant proximal (e.g., behavioral activation as measured by step count) and, possibly distal (e.g., quality of life), outcomes with care recipients.

This dyadic intervention approach is likely optimal when the care recipient evidences cognitive impairment that makes equitable contributions in psychosocial interventions challenging (e.g., moderate–severe impairment). In these clinical scenarios, care-partner-focused dyadic psychosocial interventions primarily focus on the care-partner to help them improve the physical and social environment to enhance clinical outcomes for both members the dyad (e.g., care recipient agitation and care-partner burden).¹⁹ Thus, even in in advanced stages of NCDs, psychosocial interventions can consider the care recipients’ needs. There are some challenges to this approach, including engaging care-partners in regularly scheduled sessions; the below example addresses this by utilizing a highly feasible non-clinician-delivered approach. Another weakness to this intervention approach is that there may be an overreliance on care-partners to implement intervention components. Thus, care recipient outcomes may be biased by care-partner factors (e.g., understanding, adherence) more so than a shared dyadic intervention. This potential concern highlights the importance of tracking dyadic process measures throughout the intervention process (e.g., shared activity engagement) and assessing outcomes among both dyad members independently.

Example: Wish Outcome Obstacle Plan Intervention

Wish Outcome Obstacle Plan (WOOP) is an established self-guided psychosocial intervention focused on setting and attaining goals rooted in individual models of motivational and behavioral change.⁴⁹ WOOP involves a brief training and worksheets/cards with positive psychology and psychotherapy skill-related prompts over the course of 16 days (i.e., approximately 5 minutes daily). This highly feasible and accessible intervention approach was chosen to meet the competing demands of care-partners of persons living with early-stage dementia.⁵⁰

Monin et al tested WOOP versus education booklet and supportive phone call control with 45 spousal dyads managing early-stage dementia. Care recipient cognition indicated clinical impairment (mean Mini-Mental State Examination = 22.1–23.1). Although the intervention was directed toward care-partners to complete WOOP cards, care recipients were integrated into the intervention through goals that included communication, moments of intimacy, and quality time spent together. Care-partners completed 11 WOOP cards within the 16 days (range = 2–21). Distal (i.e., depressive symptoms and quality of life) and proximal outcomes (i.e., affect and perceived stress) were measured with both dyad members independently. Results revealed significant benefits to care-partners’ positive affect, quality of life, and stress at postintervention and maintained at a 3-month follow-up. However, there were no positive outcomes observed among care recipients living with dementia.⁵⁰

Patient-Focused Dyadic Interventions

Patient-focused dyadic interventions primarily engage the care recipient and invite care-partners to select sessions to address topics explicitly relevant to the dyad, such as shared coping or communication. This intervention approach will often blend elements of individual (e.g., cognitive behavioral model) and dyadic theories of psychosocial distress and is supported by a robust empirical literature on the impact of relationship factors on the health and psychosocial well-being of both persons living with NCD and their care-partners.^18,51,52 This approach differs from individual interventions because it addresses psychosocial topics that impact both members of the dyad (e.g., relationship dynamics, issues of autonomy-support, child rearing), and both members of the dyad agree to work on these topics outside of treatment together. While some individual interventions incorporate care-partners to support the acquisition of individual coping skills for persons with NCDs,⁵³ this approach differs from a patient-focused dyadic intervention because the intervention focus is solely on issues relevant to the care recipient. Measurement for patient-focused dyadic interventions will often assess proximal (e.g., maladaptive thoughts), distal (e.g., depression), and relational (e.g., dyadic adjustment) outcomes for care recipients as well as proximal (e.g., coping strategies) and relational (e.g., dyadic adjustment) outcomes for care-partners and occasionally including distal care-partner outcomes (e.g., depression).

Patient-focused dyadic interventions are optimal for persons with NCDs that have no more than MCI and have a care-partner that is not able or willing to regularly attend psychosocial intervention sessions, which is an increasing challenge. For example, 61% of care-partners are employed, 24% report caring for multiple care recipients, and 31% live with a child; these potential barriers to participation are more common among racially and ethnically minoritized care-partners.² A strength of patient-focused dyadic interventions is that it may be easier to implement in medical settings, where the care recipient is usually the established patient. A weakness to this approach is that it may not fully address the emotional concerns of the care-partner and, when attending select sessions, the care-partner may be socialized to a supportive role, rather than prioritizing their own needs. To address this potential concern, this type of treatment must set clear goals and boundaries to ensure care-partner needs are addressed in the intervention.

Example: Cognitive Rehabilitation and Cognitive Behavioral Treatment for Early Dementia

Cognitive Rehabilitation and Cognitive Behavioral Treatment for Early Dementia (CORDIAL) is a patient-focused dyadic interventions based on cognitive behavioral therapy, reminiscence therapy, and cognitive rehabilitation.⁵⁴ Sessions target goal setting and problem-solving, use of memory aides, identifying pleasant activities, establishing daily routines, coping with memory loss, and reminiscence techniques. Although CORDIAL primarily focuses on clinical outcomes for persons with MCI, it also involves care-partners to learn their own psychosocial skills, support healthy coping among both dyad members, and gain illness education. The format (e.g., separate groups or dyadically) and frequency (e.g., attending 6 or all 12 sessions) in which they incorporate care-partners in CORDIAL varies.^54–56 Across studies, there is variability in the outcomes assessed, but consistently care recipients and care-partners are administered at least some of the same distal and proximal measures. In an RCT (n = 198 dyads) of CORDIAL versus usual care in persons with MCI in the context of NCD, care recipients and care-partners both self-reported the same distal (e.g., quality of life) and proximal measures (e.g., self-efficacy) separately. In addition, emotional distress measures were administered to both dyad members but consisted of different measures (i.e., Montgomery -Åsberg Depression Rating Scale [MADRS] for care recipients and Hospital Anxiety and Depression Scale [HADS] for care-partners); care-partners were also administered a measure of caregiver burden, and care recipients completed an additional coping measure. Care-partners attended 6 of the 11 sessions. Findings revealed significant improvements in depressive symptoms and coping skills for care recipients with MCI postintervention. There were no significant changes in care-partner outcomes.⁵⁶

Conclusion

In this paper, we presented opportunities to include both persons with NCDs and care-partners in psychosocial interventions using a flexible classification of dyadic intervention. In doing so, we build upon a recent definition of dyadic research and argue that the cognitive abilities of care recipients and availability of care-partners to attend intervention sessions must be weighed when conceptualizing and developing psychosocial dyadic interventions in the context of NCDs. This stresses the importance of considering a spectrum of participation for each dyad member in interventions that prioritize the relationship as a driver of change, rather than narrowly considering interventions dyadic if both members demonstrate equitable engagement. The field has a tremendous opportunity to grow the body of evidence for these types of dyadic interventions in neuropalliative care, for the benefits of patients, care-partners, and the larger health care system.