Few situations are as life-altering or devastating as a terminal diagnosis. Is there a role for family therapy in these times of crisis?
Portions of this entry were submitted as part of a preclinical graduate school assignment, "Approach and efficacy of Caregiver Family Therapy in Alzheimer's dementia."
Caregivers to patients with chronic or terminal illnesses experience high rates of burnout, subjective burden, depression, anxiety, and other symptoms of traumatic stress. These effects are especially pronounced in familial (informal) caregivers, who often lack formal training in coping strategies and, in addition to stress symptoms, may exhibit guilt and feelings of grief and anticipatory grief, and may be concerned that the patient’s impairment is inheritable or experience discomfort with the recipient’s symptoms. Additionally, caregivers may experience ambiguous loss for their own identity, dreams and ambitions, and for the increasing unfamiliarity of the patient as the disease progresses. Conventional interventions thus aim to increase caregivers’ sense of competence and well-being, or treat specific symptoms such as depression, through occupational health, psychoeducation, or complementary care. Here, however, I will argue that caregiver issues must be understood in a familial context and represent an opportunity for family systems therapy. I will also briefly review the general systemic approach to caregiver family therapy (CFT), specific family systems models used in CFT, the issues addressed, and the evidence for their efficacy, and discuss emerging topics in current CFT research, such as sex, age, and sociocultural considerations, which are relevant to CFT treatment.
Caregiver therapy is a rapidly-evolving field and therapists must consider the clients’ unique situation and needs; for example, although a substantial amount of research has focused on caregivers to patients with “dementia,” there are multiple types of dementia, such as Lewy body, Alzheimer’s, vascular, and frontotemporal dementia, each with their own challenges. The possibility of falls, for example, is a more substantive source of stress for vascular dementia caregivers than Alzheimer’s, and accordingly invites different caregiver coping strategies. These considerations necessitate the refined scope of this post, and I will limit my discussion to the context of familial caregivers to patients with Alzheimer’s disease (AD) dementia -- a terminal, neurodegenerative illness with cognitive, physical, and emotional sequelae, including the potential for emotional and physical abuse in the late stages of cognitive decline. I will also opt to use “recipient” rather than “patient” to highlight the continued role of the recipient in the family system, rather than merely an individual diagnosed with a terminal illness, and will assume that the caregiver is the primary patient/client for caregiver family therapy (CFT). Finally, although the term caregiver family therapy, as originally defined by Qualls, concerned familial decision-making processes and relational structures with a primary focus on the patient/recipient, I will expand this definition, for the purposes of this post, to incorporate any therapeutic model which is grounded in family systems theory and therefore considers and treats the disease, the patient/care recipient, caregiver, and family members in a systemic context.
The Family Systems Approach to Caregiver Therapy and its Efficacy
Caregivers for dementia patients appear to experience higher stress than other caregivers, such as those caring for cancer patients, and it is likely that they respond differently to particular interventions than would caregivers for recipients with other diseases. Caregiver interventions in general (systemic and non-systemic) do appear to have a positive impact on caregivers’ sense of agency, satisfaction, and quality of life, although this may be less true for older spousal caregivers. However, in addition to the symptoms of stress previously delineated, caregivers face several familial issues, including substantial demands on the time, labor, and financial resources which can be exacerbated by adding to existing parental and spousal relationships and responsibilities, leaving the caregiver feeling overburdened and resentful. Spousal caregivers may feel a loss of reciprocity, partnership and sexual intimacy; experience emotional and physical abuse as the disease progresses; and, in the case of older spouses, need to cope with their own senescence, including a decline in cognition and ability. Family dynamics, such as altered marital roles, feelings of sibling inequity, and familial contributions to caregiver guilt, have also been shown to contribute to caregiver distress. Conversely, Keeling (2008) notes that caregiving can encourage positive familial relationships, not only through support but also via the introduction of humor, new perspectives, and “re-personalizing” the recipient as a person rather than a patient or object of care. Caregiving thus represents a prototypical family systems therapy problem, and CFT must facilitate the family’s understanding of the diagnosis, address relational patterns to maximize their quality of life, and empower them balance the care recipient’s highest possible level of autonomy with safety concerns. However, geographical distance, cultural issues, a reluctance to discuss issues in front of the recipient, reluctance by the recipient to discuss the family’s concerns, and the variety of family characteristics and situations are profound challenges for CFT.
There are a limited number of sources concerning CFT efficacy, and since many studies concern caregiver-only or dyadic interventions, such as counseling or behavioral management, rather than those which involve several family members, many of the sources are expository or descriptive. Studies of these interventions, however, have generally yielded mixed or weak-to-modest associations with caregiver outcomes, and have merely tended to indicate that approaches which emphasize the caregiver-recipient relationship are more effective than psychosocial or case management approaches, and that these in turn are superior to respite care and communication technology interventions, which are ineffective. Several meta-analyses do consider the effect of various therapies, such as psychoanalytic, cognitive, psychoeducational, or mindfulness interventions in the context of the individual caregiver, but do not discriminate these from approaches which incorporate other family members. Additionally, a 2003 meta-analysis indicated that involvement of both the AD dementia caregiver and the recipient in therapy had a positive effect on caregiver “psychological morbidity” but did not show any significant effects of involvement of other family members; however, the source studies typically involved small sample sizes, and the meta-analysis did not account for the therapeutic model employed. Mittleman’s quantitative, multisite study of an “NYU model” in AD, consisting of initial individual and family sessions followed by ad hoc counseling by telephone, is a conspicuous exception to the dearth of quantitative literature in this field, not only due to its breadth, but also because it assessed family counseling in conjunction with a randomized, controlled trial of a cholinesterase inhibitor for the recipient, thereby controlling for some underlying factors and facilitating comparison of family versus individual counseling and non-counseled participants (although the specific therapeutic approach was unspecified). After controlling for potential confounds, caregivers supported with counseling were found to exhibit a decrease in depression scores, whereas scores increased for those in the non-counseling group, and reported better physical health after two years relative to the non-intervention group; moreover, family intervention was associated with a delay in recipient nursing home placement. Other large single-site or multisite studies have also supported the influence of family functioning and communication on subjective burden, life satisfaction, stress, and depression in AD dementia caregivers, and indicate that familial dynamics can serve a protective function or exacerbate AD caregiver health and well-being. Although these studies did not examine whether any particular form of family therapy improved caregiver outcomes, the association between these outcomes and family dynamics does suggest an opportunity for systemic interventions in improving caregiver quality of life.
Approach and Efficacy of Specific Family Systems Models
Caregiver burden emerges from a number of factors, both individual and systemic. CFT must address these factors, and often multiple therapeutic goals, within the family’s specific context. However, family systems models differ in many ways, and some models may be more appropriate for specific family situations but not others. There is, therefore, a need for CFT sessions to proceed from a well-defined foundation, but there is little quantitative, evidence-based support in the literature for selection of an appropriate model. Exceptions to this observation include structural ecosystems therapy (SET: a subtype of structural family theory) and cognitive-behavioral therapy (CBT), which have moderately strong support for efficacy.
As a derivative of structural family theory, SET conceptualizes the family system as a stress-process model, meaning that stressors can perturb the family, but adaptation by the family can protect its individual members from the stress; additionally, SET seeks to strengthen these familial protective structures and restructure interaction patterns which contribute to stress. Two studies of 177 and 225 caregivers and their families, respectively, found that SET interventions ameliorated caregiver depression, anxiety, and burden, and increased caregiver and familial agency, affect, support, and cohesion; furthermore, these effects were more pronounced when supplemented by ad hoc availability by telephone or computer (“augmented contact”). At a minimum, these findings are additional evidence for a familial role in caregiver well-being, and may support the specific efficacy of SET in CFT. Interestingly, however, the augmented contact option was associated with differential outcomes among participants based on origin (Hispanic versus non-Hispanic) and role (husbands, daughters, or spouses), in that augmented contact was associated with higher or lower depression scores in some subgroups, suggesting that SET’s suitability should be determined based on therapeutic goals as well as the caregiver’s sociocultural context. Conversely, the efficacy of CBT, which is focused on cognitive factors which maintain symptomatology, has also been studied in the CFT context in at least two studies: a randomized, multisite trial of 192 caregivers in the Netherlands, and a single-blind, randomized controlled trial of 100 caregivers in the United Kingdom. In both cases, participants were assigned to either family-based CBT interventions or “usual care,” consisting of individual sessions or typical healthcare and welfare services, but whereas the United Kingdom study found statistically significant improvements in depression and quality of life in the family therapy group relative to controls, the Netherlands study found no differences between the interventions. Thus, there is weak to moderate support for the efficacy of these two models in CFT; nevertheless, even large, methodologically strong studies currently yield contradictory information, and it is plausible that a number of factors, including specific family and caregiver circumstances, determine whether it is beneficial in ameliorating caregiver depression, anxiety, and subjective burden. I will discuss some of these factors in the next section.
Sex, Relational, and Sociocultural Considerations
As we saw with SET, husbands and wives, sons and daughters, and spouses may respond differently to specific interventions. These differential responses may be due to cultural differences in gender expectations or family identity, socioeconomic determinants of access to formal services, language barriers, or the parity between the therapeutic modality and the family’s religious, social, or cultural context. These considerations in turn affect the caregiver profile, their response to the recipient’s illness and their own role, and whether they seek CFT at all. For example, divorce rates in socioeconomically disadvantaged groups means that spouses are less available, and adult children more available, to serve as caregivers. Additionally, daughters are more likely than sons to serve as caregivers among many minority groups, possibly due to ingrained gender roles, whereas the oldest son and his wife are expected to assume the caregiver role among Asian-American groups. Conversely, there is some evidence that African-American and Hispanic/Latino caregivers receive more familial support than caregivers in other groups, possibly due to a strong cultural sense of family identity among these groups. Male and female caregivers also differ with respect to the sources of subjective burden: male caregiver burden appears to be most strongly associated with factors such as the caregiver’s age, nature of daily activities, and impact of caregiving on the caregiver’s health, whereas co-residence and the caregiver’s current health are stronger predictors of subjective burden for female caregivers. Additionally, Hispanic and Asian-American caregivers may see dementia symptoms as normal senescence. Hispanic/Latino AD caregivers exhibit a greater sense of burden and stress, and lower scores on health, social, and physical inventories, compared to non-Hispanic caregivers, possibly due to religio-cultural values which emphasize close interpersonal relationships, family attachment, sacrifice and selfless devotion, a sense of virility and being a provider, respect, and dignity, as well as lower availability, or lower likelihood of seeking, formal support services. The Hispanic/Latino population is also culturally diverse, and subcultural differences in social mores, traditions, and attitudes are an under-considered dimension in research, healthcare planning, and policy. However, Arévalo-Flechas and colleagues (2014) have noted that, although interventions should be more carefully tailored to this population to afford more culturally appropriate therapy, a scarcity of current research renders this difficult. Finally, language barriers and economic considerations, as well as the cultural acceptability of external help, may limit a caregiver’s knowledge of available services and the likelihood that they will avail themselves of them. In addition, parity or disparity between therapeutic modality and cultural context may partially account for a caregiver’s decision to seek therapy; Mahdavi and colleagues (2017) demonstrated a substantive effect of group spiritual therapy (chanting and prayer) on caregiver subjective burden indices in Middle Eastern caregivers, but these groups did not include the caregiver’s family. However, it would be interesting to determine the effect of the integration of spiritual therapies in family systems practice, and to determine whether such offerings expand the utilization of family systems therapy among minority groups.
Conclusions
The available evidence indicates that caregiving is quintessentially systemic, suggesting that caregivers may benefit from therapy within a family systems context. Although the quantitative evidence for the efficacy of CFT is limited, there appears to be moderately strong evidence that family dynamics are associated with caregiver depression, anxiety, and burden. Conversely, evidence for the efficacy of specific systems approaches seems to be limited to particular forms of structural and perhaps cognitive-based family therapy, and these have yielded mixed results, which may be explained, in part, by sociocultural, sex, economic, linguistic, and relational differences among caregivers and their families. Regardless, these differences account for variations in the likelihood of seeking therapy and caregiver/family responses to interventions, and as they are important considerations for policy and therapeutic planning, demand future research to ensure CFT effectiveness in specific contexts
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