Of course the negative implications of talking about what or who is burdensome are largely unintentional, as this is meant to classify the disease, not the patient as a person; but one must be aware of the social implications of the construct. Perhaps the term burden pervades the field of dementia due partially to “malignant psychology” issues [31] and less awareness of the patient’s personhood. We will come back to this in the following section.
Family Determinants of BPSD
Our Ford…had been the first to reveal the appalling dangers of family life. (Brave New World, Ch. 3, Aldous Huxley, 1932)
The “Appalling Dangers” of Family Life
This well-known quote is excessive here, but the purpose is to draw the reader’s attention to something that complements our understanding of family dynamics in dementia: family inputs may actually also turn out to be deleterious, mostly unintentionally.
Extreme examples are negligence and physical or psychological abuse. It has been reported that 11.9 % of persons with dementia experience physical abuse – a higher rate than that cited for older adults in general [32]. Cooper et al. [33] interviewed family caregivers of people with dementia in the community and found that about one third admitted abusive behaviors toward their care recipients. Anxious and depressed caregivers reported more abuse, which was also related to experiencing more abuse from patients. Although abuse could continue an earlier aggressive relationship, other caregivers reported shouting or hitting back in response to aggression that arises in the form of BPSD [33]. Their own anger, resentment, or impotence in the face of the BPSD (e.g., agitation, aggression, nocturnal disruption) may bring caregivers to the point of violence [12]. Of course this will increase the likelihood of altered behaviors in patients, adding to the feedback loop. Notably, abusive behaviors (mostly psychological, seldom physical) often stem from strain in vulnerable caregivers. Systemically, there may be several family members in need of help, not just the abused elderly person with dementia: BPSD may be both a cause and a consequence of abuse.
Here we ought to consider other, less striking but more frequent examples of how “family environment” impacts persons with dementia, awakening BPSD. There are practical discussions on this topic in several guides or self-help caregiver manuals, which are excellent learning materials for professionals. Brodaty and Burns list some of the most important: creating sudden, unexpected changes in routine or environment; ignoring the patient’s needs; repeatedly prompting or questioning in an attempt to improve memory performance; instigating “power struggles” (e.g., insisting that they should behave in particular ways); being overtly rigid, controlling, or critical; shouting, expressing anger, or aggression; “talking down” to the person as if to a child; running out of patience. Well-known in clinical practice, such caregiver behaviors may elicit catastrophic reactions in persons with dementia, when they are unable to deal with this additional stress [12].
What kind of caregiver characteristics may contribute to this? While not focusing on BPSD, the Cache County Dementia Progression Study explored “environmental” (i.e., not patient-related) determinants of the progression of AD. For instance, caregiver personality predicted rates of cognitive decline [34]. Higher neuroticism and lower extraversion were related to faster cognitive decline in adult child (but not spouse) caregivers, regardless of coresidency [34]. The same study explored the effect of caregiver–patient relationship closeness on cognitive and functional decline in AD. Patients had slower cognitive decline in dyads with higher levels of closeness and with spouse caregivers, a finding consistent with “investment theory,” [35] as explained below.
Turning to BPSD, Moore et al. examined how caregivers tried to manage them and found a limited repertoire of strategies (less than four on average). The following were most common: encouraging activity, using medications, identifying triggers, restraining, treating in a paternalistic manner, and meeting physiological needs [19]. In the face of daily challenging situations, vulnerable caregivers lack flexibility and problem-solving skills involving sensible use of a wider array of coping strategies.
The problem worsens with caregiver misattributions or depression. Caregivers may attribute forgetfulness and repetitive questioning to irresponsibility or deliberate attempts to annoy. Although a patient’s premorbid abnormal personality traits seem to affect the expression of some BPSD [36], explaining that apathy is not laziness but a feature of dementia may partially remove the frustration it brings to caregivers. However, misattributions are often deeply ingrained and less amenable to change. Moreover, longstanding personality issues in the patient, who may be mistaken for BPSD, do encourage digging into the past. On the other hand, exhausted, depressive caregivers lack the drive to cope or overtly display dysphoric mood. This is presumably unhelpful for persons with dementia, although evidence is scarce and contradictory. Mougias et al. highlighted the impact of caregiver burden, but not of depression, on the quality of life of persons with dementia [37]; others have found that caregiver depression may impact patients’ quality of life, but we lack direct evidence of its contribution to BPSD [12].
Overall, caregivers’ maladaptive communication patterns (e.g., shouting, becoming exasperated) can become major sources of patient distress. Sometimes caregivers expect too much or too little from their loved ones, and truly empathizing with patients may be a difficult endeavor for anyone involved. Mostly unintentionally, persons with dementia may be treated as objects (not psychodynamic jargon here) rather than persons, changing “I–thou” into “I–it” relationships [38]. At the same time, unhelpful family-caregiver behaviors are quite disturbing for caregivers themselves, diminishing their sense of self-efficacy and augmenting helplessness and despair. Still, they may represent the best that caregivers can do to handle complex, challenging symptoms in an emotionally close person, 24/7, often with limited help from other family members, friends, neighbors, or formal services. Some of these behaviors fit the description of expressed emotion (EE) or relate to it.
Is There a Place for Expressed Emotion in Our Understanding of BPSD in Families?
The concept of EE emerged from social psychiatry research half a century ago. Brown and Rutter coined the term after realizing that a particular emotional atmosphere in close relatives of people with schizophrenia was associated with psychotic relapse [39]. Later, Vaughn and Leff used the Camberwell Family Interview (CFI) to operationalize the construct, analyzing speech content and prosodic variables like vocal tone during interviews with family members [40]. High “negative” EE was defined as a presence of frequent critical comments about patient behavior (e.g., resentment, reproval), hostility (toward the patient as a person, not specifically their behavior), and emotional over-involvement (exaggerated emotional response, a mixture of worrying, self-sacrifice, identification with the patient, overprotection and intrusiveness). EE is now recognized as a robust predictor of schizophrenic relapse across different cultures [41]. On the other hand, “positive” EE (mainly warmth) – also common among family members – seemed unimportant to prognosis. Nowadays, high EE therefore stands for high negative EE. Leff’s group assumed that criticism and hostility generally signal that caregivers are almost giving up, while emotional over-involvement relates to guilt or separation anxiety.
EE exists in many chronic conditions, from eating disorders and old age depression [42] to diabetes, epilepsy, and back pain [43], contributing to adverse health outcomes, possibly by overstimulating patients and compromising coping skills [44]. Li and Murray recently reviewed EE in dementia, emphasizing differences between EE and “emotional expression” as related to communicating and/or symbolizing emotional experience in general [45]. EE is not a measure of emotional expression (broadly speaking), as it is linked to family contexts of chronic disease within or outside the realm of schizophrenia. Contrary to schizophrenia, the concept of “relapse” makes no sense in dementia, where the aim has been to relate EE and BPSD, cognitive symptoms, ADL, and impact on caregivers [44].
One of the first explorations of EE in dementia relatives was by Orford et al. [46]. Over-involvement was hard to identify in their sample, at least in the sense of it being the exaggerated concern and self-sacrifice found in parents of young schizophrenia patients. Likewise, critical comments were less frequent: most relatives complained of BPSD in ways that fall short of criteria for rating criticism (patients were often described in compassionate manners). In the authors’ words, “the controlling, protective role in which they find themselves has been costly for some of these families in terms of a loss of some affection and an increment in hostile interaction. Most are not blaming their confused elderly partner (or parent) for this but see the loss of affection as mutual and indeed attribute rather more hostility to themselves than to the other” [46].
Regarding the particularities of EE in dementia, state-of-the-art evidence is discussed in detail elsewhere [44, 45]. First, most caregivers actually seem to be low in EE. Nonetheless, EE rates vary in the literature, possibly due to the heterogeneity of samples and assessment methods, with the original CFI rarely being used [44]. Second, when present, EE tends to manifest as criticism rather than emotional over-involvement. Attributional research is again relevant here. Caregivers may not criticize behaviors that often represent a heavy burden (e.g., incontinence, disturbed sleep), but complain instead about repetitious speech and behavior, messiness, or argumentativeness [47]. As in schizophrenia [44, 48], it may be that caregivers perceive the latter as being more within patients’ control than the former, more readily attributed to the disease process. One study explored discrepancies between self-ratings of cognitive ability made by cognitively impaired elderly and their partners, as related to their relationship quality, including EE. High EE was associated with larger discrepancies in patient and caregiver ratings, suggesting that EE relates to disagreement about the abilities of the older person with cognitive impairments [49]. Third, caregivers’ EE is directly associated with their burden and depression [50], in rather complex ways, as previously acknowledged in schizophrenia. Criticism may be associated with low morale and poorer mental health [51]. Finally, there is little evidence to link caregivers’ EE to BPSD. The few available studies show no consistent association between EE and BPSD or patient characteristics [45]. However, there have been suggestions that high EE was linked to patients’ aggression, anger, threatening, uncooperative or paranoid behavior, and wandering [52, 53]. Vitaliano et al. conducted one of the few longitudinal explorations: at follow-up, patients living with high EE relatives (at baseline) had more BPSD than patients with low EE relatives [52].
The scarcity of evidence of a predictive relationship between EE and BPSD may be partly related to the fact that EE research in dementia has been framed differently from that into schizophrenia or depression, for example [44, 54]. Current research limitations must be addressed: a lack of longitudinal studies prevents us from assuming the direction of causality; most BPSD assessments may be biased, relying on caregiver reports (e.g., NPI-Q); finally, EE cutoffs (e.g., in the CFI) should be redefined, taking into account the specific characteristics of dementia caregiving and cross-cultural issues. Each culture has its standards of emotional expression, and high EE should be defined not in absolute terms but as a deviation from each culture’s baseline [45]. In a cross-national comparison of English and Japanese caregivers of persons with schizophrenia and dementia, EE ranks were as follows: English schizophrenia caregivers > English dementia caregivers > Japanese schizophrenia caregivers > Japanese dementia caregivers [55]. In this last sample, with a modified cutoff, EE correlated with cognitive impairment and clinical severity. EE was found useful in dementia and in Eastern countries, provided there was flexibility with cutoffs [55].
With regard to the causes of EE, there is an ongoing debate on its state or trait nature. EE has been interpreted as an “emotional thermometer” [56] in families, translating worrying and distress unto unhelpful behaviors. It may be that high EE indicates failure to cope with deficits, disabilities, or handicaps within the family, irrespective of the diagnosis [46]. Addressing the state-nature question, Hooley and Gotlib [57] proposed a dual-identities solution within a vulnerability-stress framework. High EE would combine caregivers’ intrinsic tendencies toward those attitudes (trait component) with the added stress on caregivers when facing the patient’s issues (state component) [45, 57].
Contributions to the discussion of personality as related to EE include reports that critical caregivers may be less flexible, have internal loci of control, and project their own self-criticism onto their unwell relatives. Development of attachment styles in childhood may also be important: the “prototype hypothesis” suggests that early attachment impacts future relationships, including caregiving. Attachment may be seen as an individual’s knowledge of and access to a “secure base script,” and secure base script knowledge predicted lower EE in caregivers of elderly parents with dementia [58]. Attachment representations played a greater role when caregiving tasks were perceived as more difficult. Attachment representations thus seem to influence feelings, behaviors, and the quality of care that adults provide to their elderly parents [58]. Cooper et al. found that caregivers who were less secure or more avoidantly attached reported higher anxiety levels [59].
In conclusion it is surprising how, to date, the EE construct has attracted limited interest in dementia, despite calls for more attention to be paid to it [60]. Associations between EE and illness, and patient and family outcomes, are worth studying, and despite the scant level of evidence, practical implications for care in dementia have been discussed [44, 45]. Following Wagner et al. [50], Li, and Murray [45] suggested that EE is not only a candidate risk factor for negative mental health outcomes in persons with dementia, but also an indicator of the type of interactions with their key relatives, possibly impacting both patients’ functioning and the quality of care. However, high EE caregivers should not be blamed for that [45]; they genuinely want to help their loved ones, and some of their unhelpful reactions come from lack of specialized support regarding BPSD. All these things must be put into context, as we will try to do in the following section.
The Most Powerful Resource? Coming to Terms with the Whole Scene
Viewing the family as a system is the core business of what has been called the systemic model in health, which acknowledges the complexity of family dynamics. Families are more than the sum of their parts (members), and where the individual behaviors of those parts are concerned, causal pathways are much too complex to comply with linear mechanisms (they instead often follow circularities in which cause and consequence are difficult to ascertain) [61].
Adopting a systemic view, Bloch et al. conceptualized three ways in which psychosocial family factors could be implicated in patients’ problems across different health conditions [56]: the family as reactive, the family in symptom maintenance, and the family as a resource. Acknowledging the complexity of families, the first implies that the occurrence of the illness (or an exacerbation) may be temporally related with (or indeed precipitated by) a family upheaval that was independent of the disease process; an escalation combination may then ensue, with each of the phenomena a cause and a consequence of the stress linked to the other. In a sense, the analysis of a disease’s family impact, including the caregiver burden, belongs here. The second refers to the simple fact that family interactions around the illness may inadvertently act to maintain it. The authors emphasized that in no way did they want to imply that a family is to blame for their loved one’s clinical disturbances and framed this as a basis for constructively working with families. Finally, the family “as a resource” involves not only recognizing the family as the most commonly available – and indeed the most neglected – therapeutic resource but also as a sanctuary for persons with major health issues. This conceptual framework [56], which inspired previous work by our group in both dementia [30] and severe mental illness [62], is in line with some influential formulations in BPSD [12].
Circular pathways must be hypothesized in families by acknowledging two-way relationships between persons with dementia (carrying the burden of dementia in the first person and displaying BPSD) and their family caregivers (carrying their own health problems – sometimes including cognitive impairment – and/or the burden of dementia in their loved ones). To quote Brodaty and Burns, BPSD are a potent cause of caregiver distress; but less clearly appreciated is the fact that caregiver distress and poor interpersonal relations between the person with dementia and the caregiver can exacerbate BPSD [12]. There is often an escalation of these two directions of causality. Additionally, these interactions may further challenge the family’s ability to cope if dementia manifests itself or worsens during family life-cycle transitions which themselves call for system adaptability (e.g., an adult child moving out of their parents’ home, the birth of a grandchild). Last but not least, positive inputs may come from any or everyone involved (Fig. 15.2).
Fig. 15.2
How BPSD run in families: circular pathways?
Circularities of this kind are frequently hypothesized in clinical practice, and such hypotheses are often useful. However, the evidence base is still limited, due in part to methodological difficulties: e.g., as discussed above for EE in dementia, most studies are cross-sectional, so direction of causality may be unclear [12]. In an attempt to illustrate why these issues deserve further investigation, we will now provide examples of patient, caregiver, or systemic variables that seem increasingly relevant to our understanding of family issues in BPSD.
Personality Vulnerability and Protective Factors in Dementia-Related Stress
Personality traits may act as either vulnerability or protective factors for stress in general. Earlier in the chapter, we provided examples of how caregivers’ personality traits may influence dementia outcomes. There is also evidence that neuroticism and introversion are associated with caregiver depression and burden, and that personality characteristics indirectly influence BPSD-related distress in caregivers [63]. We would now like to focus on other personality dispositions that are probably protective for both caregivers and patients. Resilience, for instance, helps to adapt in the face of adversity [64]. Adopting a salutogenic perspective, Antonovsky tried to explain how coping resources may contribute to health [65]. He defined sense of coherence (SOC) as a global orientation expressing the extent to which one has a pervasive, enduring, and dynamic confidence that environmental stimuli are structured, predictable, or explicable (“comprehensibility”); that resources are available to meet those challenges (“manageability”); and that the challenges are worthy of engagement (“meaningfulness”). SOC has been recognized as an important health determinant [66, 67]. In dementia, SOC research has thus far focused on caregivers [68]. It is useful for identifying caregivers at risk, through associations with their patterns of coping and subjective burden [69]. Matsushita et al. reported that SOC was significantly related to “personal strain” (“how personally stressful the experience is”) but not to the “role strain” (“stress due to role conflict or overload”) generated by caregiving [70]. Although we lack direct evidence in persons with dementia, SOC can play a role in buffering both the manifestations of BPSD in patients and reactions to them in caregivers. Studying couples, Marques [71] highlighted the role of “comprehensibility” (one component of SOC – i.e., “life makes sense”) in adapting to a diagnosis of dementia in the family. Good pre-caregiving and current type of relationship were associated with the “manageability” (ability to cope constructively) and “meaningfulness” (viewing life as a challenge, not as a threat) aspects of caregiver SOC. In addition, relationship quality was related to more positive patterns of caregiving and fostered successful adaptation to changing needs in dementia [71] – an observation that leads us on to the next topic.
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