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The chapter will focus on findings from research aimed at studying the impact of caregiving for spouses living with cognitive impairment through the prism of the Two-Track Model of Dementia Grief. This model provides a bifocal approach addressing the nature of the emotional attachment to a loved one living with cognitive impairment, along with a medico-psychiatric perspective related to stress, trauma, and life transitions. In order to examine the research hypotheses, the study was designed to be cross-sectional and included 122 participants recruited among four groups: spouses of individuals currently living with mild to moderate cognitive impairment, spouses of individuals living with advanced-stage dementia, widows and widowers of deceased dementia sufferers, and a control group. Participants completed a battery of self-report questionnaires. Following a presentation of the results on the bio-psycho-social consequences of the informal caregivers’ role and the ongoing emotional connection to the spouse living with dementia, the chapter will highlight various risk factors for maladaptive outcomes concerning the different stages of the disease. In addition, the chapter will discuss the research findings and their theoretical and empirical significance, as well as how these findings can be translated and contribute to clinical practice today.
Department of Psychology, Kinneret Academic College, Israel
International Laboratory for the Study of Loss, Bereavement and Human Resilience and the School of Psychological Sciences, University of Haifa, Israel
*Address all correspondence to: manevichalex7@gmail.com
1. Introduction
The population’s life expectancy is continuously increasing, and as people age, so do chronic and life-endangering illnesses. Alzheimer’s Disease and Alzheimer’s Disease-Related Dementias (AD/ADRD) are considered to be among the most painful and devastating diseases of old age. They have a significant impact on patients, their families and society as a whole. AD/ADRD encompasses a spectrum of severe neurocognitive disorders with diverse origins and clinical manifestations. It is a progressive syndrome characterized by functional and cognitive deficits, often accompanied by negative changes in personality and behavior [1]. According to experts, the number of individuals with AD/ADRD is anticipated to rise from 57.4 million cases globally in 2019 to 152.8 million cases in 2050 [2]. This “silent pandemic” [3] will impact informal patient support networks (primarily spouses and adult children), which provide a large portion of the day-to-day care required for AD/ADRD cases [4].
Caregiving for a family member living with cognitive impairment involves coping with many challenges and losses. This experience can have a negative impact on the caregiver’s mental well-being [5]. Caring for loved ones with cognitive impairment has been the focus of numerous studies on stress and burden. However, theory and research on family members’ pre-death grief reactions still lag [6]. Pre-death grief in the context of dementia caregiving (i.e., dementia grief) is the caregiver’s emotional and physical response to the dementia-related losses in a meaningful care recipient. This response is due to (a) the patient’s psychological death, which is asynchronous with their physical death, (b) the extended and ambiguous course of the disease, (c) impaired communication between the care recipient and family members, and (d) changes in relationship quality, family roles and caretaker’s lack of freedom [7].
Empirical research documenting dementia grief reactions among family members is growing rapidly. These reactions start with initial changes in a dementia patient’s cognitive function and increase as the disease progresses (e.g., Refs. [8, 9, 10, 11]). Despite these developments, the understanding of the effects of caregiving on family members after the patient’s death is still limited [12]. While caregivers may find the death of a care recipient as a relief [13], they face additional challenges in grieving that can extend well beyond the first year of bereavement [14]. Pre-death grief is associated with distressing feelings of depression, burden, and maladjustment, which may require professional intervention before and after death [15, 16]. For example, a recent systematic review found studies showing that 17% of dementia caregivers met the Prolonged Grief Disorder (PGD) criteria before death, and 6–26% of participants met the PGD criteria after death [17].
In spite of the growing number of studies on dementia grief, the knowledge in this field continues to suffer from significant limitations. These include the lack of control groups, the use of unvalidated research measures, the lack of research on post-death experience among caregivers, and insufficient consideration of cultural, ethnic, and gender diversity. Furthermore, an overemphasis on empirical research without adequate consideration of the potential of theoretical frameworks to guide the selection of research areas is also limited [18]. The present study aims, among others, were to address these gaps. Moreover, grief is not only how people live and function in the face of their interpersonal loss but also the ways in which they psychologically reorganize their relationship with the loved person. In other words, the massive challenges to the previously formed representational matrices of the particular relationship and attachment to that individual are considered by some to be the essence of the experience of grief and bereavement [19]. To date, most research conducted in the context of dementia grief has focused on family members’ functioning (depression, anxiety, distress, burden, etc.) without sufficient attention to the interpersonal sphere and how the disease has affected their representations of memories, thoughts, and feelings toward the significant other living with cognitive decline. The current study sought to bridge the gap that exists in the professional literature on this topic.
Two main theoretical and research approaches guided the study. The first, John Bowlby’s Attachment theory [20], emphasizes the importance of relationships in the development and socio-emotional functioning throughout the life cycle of the individual. A person’s attachment style can significantly influence their emotional adjustment throughout the grief process. People with insecure attachment patterns may be at higher risk for coping difficulties and have limited social support resources [21]. For many people, coping with dementia caregiving involves experiencing loss occurring in the context of separation from an attachment figure that is no longer what he or she once was. This brings with it feelings of insecurity and threatens the very basis of what had once been a secure relationship to anchor oneself. However, it is quite rare to find in the literature a reference to the processes undergone by family members who are caregiving for a loved one living with cognitive decline that is framed in this theory [22].
The second theoretical and research approach is drawn from the Two-Track Model of Dementia Grief (TTM-DG; [6]). The TTM-DG builds on the well-established paradigm of the Two-Track Model of Bereavement [19, 23, 24] that has proven to be effective over the years in directing research attention and formulating clinical interventions in cases of loss and bereavement (e.g., Refs. [25, 26, 27]). The TTM-DG bifocal approach combines the bio-psycho-social levels of symptomatology associated with responses to stressful, traumatic, and significant changes in life, along with the ongoing emotional attachment to a loved one living with cognitive impairment. This model describes the response to loss and the process of adaptation to it as related to two interrelated and multi-dimensional tracks: Track I focuses on the impact of loss on everyday bio-psycho-social functioning (e.g., anxiety, depression, social and occupational functioning), while Track II focuses on the ongoing emotional bond and relationship to the loved-one living with cognitive impairment (longing and yearning, preoccupation, etc.) [6].
Therefore, the present study aimed to use the prism of Attachment theory and TTM-DG to improve understanding of the emotional processes involved in caring for a spouse living with cognitive decline. A heightened understanding of the issue will help promote evidence-based evaluation and intervention approaches to improve the quality of life of family members caring for loved ones living with cognitive decline.
The study was conducted throughout 2018–2021 under the auspices of the Department of Psychological Sciences at the University of Haifa and in collaboration with the Cognitive Neurology Institute at the “Rambam” Health Care Campus, as well as with geriatric organizations and institutions across Israel (see “Acknowledgements” section). To examine the research hypotheses, the study was designed to be cross-sectional and included 122 participants (mean age = 72.77) recruited among four groups: spouses of people currently living with mild to moderate cognitive impairment, spouses of people currently living with advanced-stage dementia, widows and widowers of deceased dementia patients, and a control group (for sample characteristics, see Manevich et al. [18]).
Participants completed a battery of self-report questionnaires. The battery of research questionnaires for the independent variables focused on three parameters: (a) Caregiving spouse background characteristics (sociodemographic questionnaire, background information, and social support questionnaire, α = .88 [28]); (b) objective burden related to the caregiver’s role (patient’s problematic behaviors questionnaire, α = .93 [29] and objective burden questionnaire, α = .84 [30]); and (c) personality questionnaires (attachment questionnaire, α = .80 [31] and sense of coherence questionnaire, α = .82 [32]). The dependent variables were chosen in accord with the framework of the TTM-DG: (1) bio-psycho-social functioning of the caregiving spouse (physical health status questionnaire, α = .88 [33], questionnaire for assessing depression, α = .79 [34], and the functional difficulties factor included in the Two-Track Model questionnaire, α = .85 [35]); and (2) ongoing emotional attachment and relationship to the ill spouse (relationship satisfaction questionnaire, α = .85 [36], inclusion of other in self scale, r = .636 [37], object representations inventory, α = .82–.95 [38], and three factors from the Two-Track Model questionnaire: active grief and trauma, α = .71, conflicting aspects of the relationship, α = .83, and positive and close relationship, α = .86 [35]).
The first cluster of hypotheses focused on the relationship between disease progression and the functioning of the caregiving spouse (Track I) and the characteristics of the relationship with the loved one living with cognitive decline (Track II). Consistent with Hypothesis 1a, psychological responses that characterize coping with loss were evident already in the initial stages of the disease (for group comparisons, Table 1). These responses were manifested both in functional distress among the healthy spouses and in adverse changes in the level of the relational bond with the ill spouse. Furthermore, consistently with Hypothesis 1b, the findings showed that advanced stages of cognitive decline were found to be associated with the worsening emotional and functional state of the healthy spouses, as well as deterioration of the relationship with the significant other. The death of the spouse following cognitive decline had complex consequences for the bereaved. While the bereaved’s level of depression remained elevated, overall bio-psycho-social functioning tended to improve. The findings are consistent with the idea that “physical death” allows for re-grieving for the loss of the significant other [6]. The internal representations of the deceased undergo an additional reorganization by the bereaved group and shift the experience of the deceased spouse to be more similar to the control group than to the two clinical groups. Moreover, time since death was correlated with positive changes in the ongoing emotional bond with the spouse.
Group comparisons on the two-track model of dementia grief.
MMCI > ACI marginal significance.
ACI > CG marginal significance.
Note. CG: control group; MMCI: mild to moderate cognitive impairment; ACI: advanced cognitive impairment; W: widows and widowers.
The degenerative course of the disease requires the caregiving family members to adapt to the frequently changing reality, as well as to bear the difficult emotions accompanying the recognition of the losses that occurred without returning [39]. The title of Sikes and Hall’s article [40] vividly illustrates the complex experience that the family members have to cope with: “Every time I see him he’s the worst he’s ever been and the best he’ll ever be.” The findings provide additional support for previous studies that documented the relationship between the progression of the disease and the aversive consequences on the emotional state of the caregiving family members [8, 9, 10, 11, 41, 42]. The unique contribution of the present study is expressed first and foremost in putting the spotlight on the processes that take place at the level of the relationship with the partner living with the disease (Track II). In addition, the study was designed to provide an answer to the methodological limitations of past studies (e.g., Refs. [43, 44, 45]), with an emphasis on the use of reliable and valid tools, as well as in comparison to a control group that did not experience loss. Furthermore, to the best of our knowledge, the findings provide the first validation of the research topic among Israeli participants.
As for the findings concerning the widowed group, the impression emerges that coping with the spouse’s illness may have somewhat opposite consequences for the bereaved. On the one hand, the levels of depression among the widowed do not subside over time, but on the contrary, remain quite high, and this is similar to the findings that did not identify a difference between the level of distress of the family members before and after the physical loss of the patient [46]. On the other hand, in the current study, a decrease in the level of bio-psycho-social dysfunction was also observed compared to the advanced stages of the disease. That is, alongside the relief in the degree of the burden associated with the role of the caregiver that the widowed may experience [47], among the current sample, a persistent depressive reaction was observed, which may also be related to the loss of the role of the primary caregiver role; a role that provided a sense of value, competence, and meaning to the partner while the patient was still alive [48]. That is, for them, the event of death may cause their outer and inner world to “become poor and empty” [49], both due to the loss of the spouse and due to the loss of the “primary caregiver” identity.
The findings also show that in most of the indicators related to the relationship, the group of widowers is more similar to the control group than to the groups of spouses of those living with cognitive decline, except for elevated levels of conflict and a decrease in the degree of satisfaction with the relationship. In other words, the findings imply that the death made it possible for the widowers to mourn anew, reorganize the relationship, and integrate the “disease story” into their life narrative. This means the course of the disease is full of upheavals, and the changes in the personality of the significant other may not allow stability in his internal representations. On the other hand, his “formal death” may be a catalyst for finding a balance between his various representations, thus enabling “emotional object constancy” [50]. Therefore, it can be said that for those caregiving for a “living” partner suffering from cognitive decline, time is “frozen” and the grieving process may standstill [51], so the difficult reality in the shadow of the disease does not allow sufficient emotional and mental processing of it during its occurrence. On the other hand, the “formal” death event allows the bereaved spouses to say goodbye, re-grieve and bring the relationship into balance in a more benevolent and integrative way [6]. Moreover, as can be seen, the findings support evidence from past studies, which shows that the two tracks in the Two-Track Model of Bereavement are indeed interrelated but not necessarily the same [19].
3.2 Hypotheses cluster no. 2
The second cluster of hypotheses focused on examining the relationship between the background characteristics of the participants and their overall functioning (Track I) and the characteristics of their relationship with their spouse (Track II). Among the entire ample, there were almost no gender differences, which did not support Hypothesis 2a. Follow-up analyses, however, focusing on gender differences for the various groups yielded a more nuanced picture. In the initial stages, women reported more difficulties in adapting to the reality of the disease. That is, the hypothesis according to which women will report more difficulties across the two tracks received support only for the initial stages of the partner’s cognitive decline, thus partially aligning with past studies (e.g., Refs. [10, 52]). However, contrary to the cited studies, the current findings imply that although women may indeed experience more difficulties in the process of adapting to the reality of the disease in its initial stages, as it progresses, the gender differences tend to blur and narrow. Furthermore, it may be argued that women are more likely to take the primary caregiving role than men. That is, it could be assumed that the gender differences found are due to the fact that women are the actual caregivers for their spouses, so they face a greater burden that negatively affects their emotional state. However, this explanation did not find support in the current study, since no gender difference was found among the group of spouses of those living with mild to moderate cognitive decline in the amount of receiving external assistance, as well as in the hours devoted to caring for the spouse.
Consistently with Hypothesis 2b, the existence of a social support network was found to be a protective factor in the face of functional distress, and to a lesser extent, yielding fewer difficulties in the experience of the relationship. The existence of a social support system is a very valuable resource for people in general and in the process of adapting to loss as a result of death in particular [53]. Moreover, the unique elements that characterize mourning for a person while alive as a result of cognitive decline may lead to this loss not being recognized, legitimized, and socially supported. That is, the existence of “disenfranchised grief” is documented in the scientific literature as a distinct risk factor for difficulties adjusting to loss [48]. The present study findings are consistent with past studies that provided support for the effects of social support on coping with the loss of a spouse in general [54] and due to cognitive decline in particular (e.g., Refs. [55, 56]). This issue is of particularly high importance, and this is in light of the research evidence that increasing age is associated with an increase in the feeling of loneliness [57], with the latter being a clear predictor of depressive symptoms among the elderly [58].
In addition, high levels of socioeconomic status and education were found to be associated with greater resilience vis-a-vis bio-psycho-social distress but not to difficulties at the level of the relationship. Thus, it can be argued that Hypothesis 2c received only partial support. These findings are consistent with previous findings that identified economic status and education as factors related to the process of adapting to loss that must be taken into account when formulating a clinical intervention [19]. For example, a prospective study focused on family members of people suffering from cancer found that low levels of education predicted more coping difficulties after the patient’s death [59]. Also, another longitudinal study measured the levels of depression among family members of people living with Alzheimer’s disease before the physical loss and a year and a half after and found that low income predicted higher levels of depression during the bereavement period [47]. In another study, the researchers identified among 394 family members (adult children and spouses) of people living with dementia three major risk factors for grief before the expected death of the significant other: younger age of the patient, being a spouse of the patient, and a lower level of education of the caregiver [60]. In conclusion, like the lyrics of the Beatles’ song “Can’t buy me love,” it appears from the findings that financial resources and education may indeed serve as a resilience factor in the face of physical and psychological pain, but they cannot be a substitute for connection, attachment and loving relationships [61].
Contrary to Hypothesis 2d, which predicted that religious belief would constitute a protective factor among the general sample, it was found that those with higher religious beliefs reported more functional difficulties. Follow-up analyses that focused on the role of religious belief based on the specific research groups found that the contribution of religiosity to the functional and spousal well-being of the individual varies depending on the situation they are coping with. Among spouses of people living with cognitive decline, religious belief was found to be a risk factor, while alternatively, among those who are not coping with this situation (control group), religious belief was found to be a resilience factor.
Friedrich Nietzsche best described the essence of coping with human suffering with the words: “He who has a ‘why’ to live, can bear almost any ‘how’.” A traumatic event, such as the loss of a significant other, may cause a break in the continuum of the “self” experience, thereby undermining the individual’s real and spiritual world [62]. In light of this, one of the key processes in adapting to loss is the gradual reconstruction of a new meaning to life without the loved one. Therefore, the framework of values and beliefs of the “survivor” may have a promoting or inhibiting effect in the process of processing the loss [63]. Although belonging to a religious framework and belief have often been documented as being associated with improved mental and physical health [13], it does not necessarily guarantee an adaptive response to loss, so it may affect person’s values and religious views [19]. Therefore, it can be assumed that the unique circumstances of reality in the shadow of cognitive decline (such as its prolonged course, neuropsychiatric disorders, and so on) may constitute an extreme stress factor that undermines the frames of meaning and belief of the caregiving partner, and thus they are a risk factor for adjustment difficulties. Furthermore, unlike bereavement as a result of death, in which religion provides community support frameworks, a belief system, rituals and behavioral norms, the process of loss and grieving due to cognitive decline lacks these constructs. On the other hand, the impression emerges that in the absence of an interpersonal stressor of the type discussed (control group), those with religious faith do report lower levels of depression compared to those who define themselves as secular, as initially hypothesized, and thus faith indeed constitutes a protective factor for them against emotional difficulties.
3.3 Hypotheses cluster no. 3
The third cluster of hypotheses focused on the relationship between the objective circumstances related to the caregiver’s role in their overall functioning and the characteristics of their relationship with the patient. Consistent with Hypothesis 3a high levels of the patient’s behavioral symptoms were found to be associated with greater functional distress and exacerbation of difficulty in the nature of the relational bond with them. Various severe behavioral and mental symptoms may appear with the deterioration of the patient’s cognitive state, such as aggression, restlessness and paranoid delusions. These symptoms have been reported in the professional literature as one of the main causes of distress in caring for family members [64]. The findings of the current study broaden the horizon regarding the consequences of neuropsychiatric disorders on the relationship with the living partner with cognitive decline and its psychological representation. In addition, the current study supports past findings (e.g., Liew et al. [60]) around the relationship between the patient’s behavioral disorders and the difficulties in the bio-psycho-social functioning of the healthy partner.
Despite the rarity of the conceptualization of the mental and behavioral symptoms of cognitive decline from the psychodynamic perspective, they can also be understood as defence mechanisms that are activated more frequently in the face of the disintegration of the self. In the pioneering article by Evans [65], three stages of the dementia process are described: (a) the existence of the ego that is aware of the loss and reacts with symptoms of anxiety, depression, and sometimes even denial; (b) the weakening of the “reality principle” against the “pleasure principle” at a time when the connection with the external world dims, so that existential anxiety gives way to disinhibition and the appearance of delusions about jealousy and persecution; and (c) the loss of the ability to communicate verbally and regression to communication methods of “projective identification,” when the distress manifests itself in abnormal mobility. That is, the syndrome is described as a chronological sequence in which, first, an affective reaction appears, which alternates with a psychotic and/or frontal symptomatology, and at the end, abnormal mobility and apathy. This type of conceptualization may contribute to the understanding of the parallel psychological processes that may occur among the caregiving spouses who are the focus of the present study throughout the process of the cognitive deterioration of the significant other.
Consistent with Hypothesis 3b, a high burden as a result of the caregiver’s role was found to be associated with greater distress and aggravation in the nature of the relationship with the spouse. These findings are consistent with the extensive documentation available in the professional literature regarding the negative consequences of the level of burden and personal sacrifice as a result of the caregiver’s role on the functional and mental state of family members [47, 66, 67]. The unique contribution of the findings of the present study is expressed by placing the spotlight on the relationship sphere alongside strengthening the existing empirical infrastructure on the subject of the consequences of caregiving on the mental distress of people whose partners live with cognitive decline.
Borrowing from theories of family systems, the concept of “parentification” can be adopted and integrated into the professional discourse of the current research focus. In its original use, the term describes a blurring of boundaries between parents and children, when the latter plays a parental role in the family, a role that may have long-term consequences on the mental and social development of the individual [68]. Similarly, and because most of the day-to-day care needed by people living with cognitive decline (such as bathing, dressing, cooking and feeding) is provided by informal support networks, such as spouses and older children [4]; even in the discussed case there is a blurring of boundaries between spouses, when one plays a parental role for the other. About the parentification experience in the context of a relationship in the shadow of cognitive decline, one can get an impression from the words of an 82-year-old widow who lost her husband who was living with Alzheimer’s disease 11 months ago, which constitute a kind of “flash fiction”: “At the age of 70 suddenly I had a baby.”
Following this, the use of psychoanalytic concepts may contribute to a deeper understanding of the inner psychological experience that the couple has to cope with. “Primary maternal preoccupation” [69] is a concept that describes the unique experience of the mother in the early stages of the baby’s life, in which she suspends the satisfaction of her needs and her subjectivity and is fully invested in satisfying his needs. That is, an experience that is “the loss of the self within the other.” Similarly, many times, spouses of people living with cognitive decline slowly become “parents” to a “helpless infant” in a retrogenic process of development. That is, there is a regressive process with the opposite direction to that described by Winnicott, from a situation of two subjects that maintain mutual relations to a symbiotic relationship with self-negation and loss of identity to the point of “incorporation” in a way that may contribute to increasing psychological distress; as reported in Hypotheses cluster no. 1 which focused on the emotional coping of the healthy couple depending on the stages of the disease.
3.4 Hypotheses cluster no. 4
The fourth cluster of hypotheses focused on the relationship between psychological resilience factors and general functioning measures, and the relationship with the spouse. Consistently with Hypothesis 4a, low levels of attachment anxiety and avoidance (with an emphasis on the anxiety axis) constitute a significant protective factor concerning functional symptomatology and difficulties at the level of the relationship with the spouse.
People with secure attachments tend to have a positive image of the self and the other, thus having the ability to maintain meaningful relationships with a degree of autonomy. On the other hand, preoccupied attachment is associated with a negative self-image and the idealization of the other, which may lead to the fact that the self-image depends on the evaluation of the environment and, thus, to the hyper-activation of the attachment system in order to receive reinforcement and support. In an avoidant attachment style, there may be a positive self-image alongside a negative perception of the other and the environment. This attachment manifests itself in avoiding intimate relationships and relying solely on the self, thus under-activating the attachment system. Fearful attachment is characterized by a negative image of both the self and the environment and may manifest itself in social withdrawal while perceiving oneself as unworthy of appreciation and love [70]. Therefore, in accordance with Hypothesis 4b, those with a secure attachment style reported fewer functional and interpersonal difficulties compared with those with an insecure attachment style. In detail, the functional and relational distress that the individual experiences in the shadow of loss due to cognitive decline tends to be relatively low among those with “secure attachment,” whereas those with “fearful attachment” tend to report greater distress.
These findings, combined with the rich documentation in the professional literature, show the effect of the quality of the attachment pattern on the individual’s perception of self and others, his interpersonal relationships, and his emotional functioning throughout the life cycle (e.g., [70]). Past studies have found that the person’s attachment style may make a significant contribution to promoting the person’s adaptation in light of dealing with the loss of a significant other in general [71] and as a result of cognitive decline in particular [72]; in a way that a secure attachment has been found to be related to the well-being of the main caregiver and is a psychological basis that promotes the ability to provide support and care for others [73]. Hence, the practical recommendation is to combine psychotherapeutic intervention approaches based on attachment theory [74] into clinical settings focused on the process of grief for the loss of a significant other as a result of cognitive decline.
In addition, a high sense of coherence was found to be a significant resilience factor with regard to the existence of functional symptomatology and difficulties at the relationship level, in accordance with Hypothesis 4c. The findings obtained in the current study are in line with past findings that concluded that the individual’s sense of coherence is a valuable psychological resource that may help in the process of coping with life crises and interpersonal loss, such as the loss of a spouse as a result of death [75], and coping with a spouse living with cognitive decline [76, 77]. For example, Potier et al. [77] found among elderly spouses of people living with cognitive decline, those with high levels of a sense of coherence reported lower levels of burden. That is, a high sense of coherence was found to be a protective factor against functional and emotional difficulties related to caregiving.
3.5 Hypotheses cluster no. 5
The fifth hypothesis of the study focused on the moderating effect of attachment style on the association between the severity of cognitive decline and general functioning and the relationship with the spouse. The findings indicate that attachment style is a resilient variable vis-a-vis the depressive response among spouses of mild to moderate cognitive decline and widowers but not for spouses of people living with advanced-stage dementia [78].
Following on from the above, it is interesting to note that although the attachment style was a significant resilience variable in the face of adversity among the spouses of people living with mild to moderate cognitive decline and the widowed, the levels of distress among those with a secure attachment style was that of the participants from among the control group, no difference was found among the spouses of those living with progressive cognitive decline. The findings show that the latter reported the highest levels of depression and bio-psycho-social functioning difficulties, and therefore, it can be assumed that the attachment style is no longer effective in the shadow of the traumatic and chronic elements associated with caregiving for a spouse living with cognitive decline. That is, the effectiveness of the psychological protection provided by the individual’s attachment style may collapse under the burden of the demands of reality. Borrowing from the common concepts of Bion [79], it can be said that the “container” of the spouses of people living with advanced dementia has “overflowed” and no longer has sufficient capacity to contain the “contained” demands of the caregiving reality. At the same time, the findings also show that among widowers who have lost a partner who was living with cognitive decline, the effectiveness of the attachment system “recalibrates” and becomes once again a resilience factor against depression.
Most studies so far have focused on the effect of attachment on coping with the loss of a significant other as a result of death, such as the moderating effect of attachment on the relationship between coping with violent death and physical and mental symptoms [80], the moderating effect of attachment on the relationship between grief and post-traumatic growth [81], and so on. It appears that there is only one study that examined this moderating effect in non-death losses [82]. This study found that in bereavement, attachment avoidance was associated with relief of grief symptomatology. On the other hand, in non-death losses, attachment anxiety was associated with greater distress for family members caring for a significant other suffering from prolonged disorders of consciousness.
The findings of the present study contribute to the deepening of the understanding of the moderating role of the attachment style in coping with the loss of a significant other as a result of cognitive decline in different degrees of severity. Unlike the study mentioned above [82], which focused on family members whose loved one suffers from a persistent vegetative state or minimally conscious state, which is mostly static by nature and does not allow interpersonal interaction with the loved one, in situations of progressive cognitive decline, which are the focus of the current research, it is a continuous process in which the significant other deteriorates before the eyes of those around him and may also include serious behavioral disorders. Therefore, it is recommended that follow-up studies conduct comparisons between people whose loved ones suffer from various syndromes involving cognitive decline (such as traumatic head injury, dementia, coma, and so on) to deepen the understanding of the effects of the type of cognitive decline (its duration, as well as quality and quantity of the interpersonal information received from the patient) on the grief processes and the adaptation of the caring family members [3].
3.6 Hypothesis 6
The sixth hypothesis focused on the use of path analysis to deepen the understanding of the grief and coping processes that healthy spouses go through based on the TTM-DG [6]. The research model yielded six variables in accordance with the predictions of the proposed theoretical model: (a) behavioral disorders, (b) objective burden, (c) social support, (d) physical health, (e) attachment anxiety; and an (f) two-track distress (overall functioning and relationship). It was found that the ill spouse’s behavioral disorders predicted the objective burden of the caregiving spouse, which in turn predicted two-track distress. In addition, it was found that social support moderated the relationship between the patient’s behavioral disorders and the burden and that the healthy partner’s physical health and the level of attachment anxiety moderated the relationship between objective burden and outcome measures (Figure 1). It should be noted that the model found in the current study had the best explanatory power, both in terms of significance and in terms of fit indices, and this is in comparison to alternative models that were tested. Since this is the first validation study of the theoretical model, it is recommended that follow-up studies be based on larger participant samples, which will allow for the inclusion of a greater number of variables and hypotheses and contribute to improving its explanatory power.
Figure 1.
Structural equation modeling (SEM) based on the TTM-DG. Source: Reprinted with permission from Manevich et al. [83].
4. Research limitations and suggestions for further study
The current study may have several potential limitations that should be considered. First, it is a convenience sample that is not probabilistic and therefore may not represent the population faithfully, thus limiting the ability to generalize the findings for the entire studied population. Furthermore, using self-report questionnaires does not allow to rule out the possible intervention of various factors, such as social desirability and different personality patterns. It is worth noting that the group of widowers included mostly women, which limits the process of drawing conclusions about men who had a partner who suffered from cognitive decline. Also, the findings should be considered preliminary in light of the limitations of the sample size. Finally, the current research is correlational, ruling out the possibility of inferring causality between the variables.
Accordingly, it is recommended that follow-up studies take the following steps in order to expand the theoretical and clinical knowledge on the subject under discussion: the application of probabilistic sampling methods to improve the ability to draw conclusions for the entire population; recruiting a larger sample of participants to strengthen the validity of the findings and their generalization; incorporating research tools with high objective validity such as structured clinical interviews and/or physiological measures, in addition to self-report questionnaires; and planning prospective research set for inferring causality with regard to the various stages of the disease. Furthermore, it would be recommended that an intervention protocol be formulated based on the findings of the current study, and to test its effectiveness in a clinical trial.
The purpose of the present study was to deepen the understanding of the emotional processes involved in caregiving for a partner living with cognitive decline through the prism of Attachment Theory and the TTM-DG. The research findings were presented according to six clusters: (1) the relationship between the stages of disease progression and the outcome measures; (2) the relationship between background variables (gender, social support, socioeconomic status, and religious belief) and the outcome measures; (3) the relationship between burden variables (neuropsychiatric symptoms and objective burden) and outcome measures; (4) the relationship between psychological variables (attachment style and sense of coherence) and outcome measures; (5) interaction between attachment style and disease stages on outcome measures; (6) a path analysis model based on the variables of the present study. Overall, the research findings in this study provide empirical support for the utility of the TTM-DG. This model provides a virtual “map” that assists in the clinical assessment required to identify the strengths and weaknesses of clients whose loved ones live with cognitive decline.
The “transitional space” that the British psychoanalyst Winnicott [84] described so well focuses on the playful and healthy aspect that may characterize the intermediate zone of the experience where the border between reality and fantasy blurs. The cognitive decline of a significant other is characterized by the fact that the person is indeed “alive” on the physical level but is actually “absent” in the psychological realm [85]. That is, the physical presence of the significant other continues to exist at the same time as the painful reminder of how he or she was before the disease. An ambiguous situation of this type may remind somewhat of Winnicott’s concept; however, in the case in question, although there is a fusion between reality and a dream, many times, this may be experienced as a “nightmare” that does not end. However, despite the great pain that may accompany this reality, it also provides us with a rare glimpse into the most beautiful elements of human existence, such as devotion, commitment, sacrifice, resilience, compassion, tolerance, and love. During the current research, I had the extraordinary privilege of being exposed to the unique stories of the participants, who will continue to accompany me on both my personal and professional journey—for which I am very grateful. In conclusion, the current study focused on the processes of grief and loss experienced by the spouses of people living with cognitive decline, and in the hope that its findings will contribute to deepening the theoretical understanding of this unique coping and will help to formulate evidence-based assessment and intervention methods, thus alleviating the existential suffering and improving the quality of life of those who lost the most precious to them.
The author would like to thank Prof. Simon Shimshon Rubin and Dr. Michael Katz for the doctoral supervision; Prof. Judith Aharon-Peretz and Dr. Rachel Ben-Hayun for the collaboration; and “Association of Israelis of Central European Origin,” “Beit Avraham,” “Beth Juliana,” “Bayit Bakfar,” “EMDA”—The Alzheimer’s Association of Israel, Hala Bibar, Sujoud Saqer, and Dr. Hend Yasien-Esmael for their assistance.
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Written By
Alexander Manevich
Submitted: 21 February 2024Reviewed: 08 March 2024Published: 02 April 2024
Open access peer-reviewed chapter - ONLINE FIRST
