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MARRIAGE AND ATTACHMENT IN ALZHEIMER’S DISEASE: A LITERATURE REVIEW

 

P. Velotti1, R. Castellano1, M. Canevelli2, G. Bruno2

 

1. Department of Educational Sciences, University of Genoa, Italy; 2. Department of Neurology and Psychiatry, Memory Clinic, University of Rome « Sapienza », Italy

Corresponding Author: Patrizia Velotti, C.so Andrea Podestà 2, 16126 Genoa, Italy; Phone: +3901020953722; Fax: +3901020953728; Email: patrizia.velotti@unige.it.

 


Abstract

This article presents an overview of the role of attachment in the couple’ relationship in presence of a partner with Alzheimer’s Disease. The diagnosis of Alzheimer Disease has profound repercussions on the individual and family system. The first objective of this report is to discuss literature on the association between Alzheimer Disease and couple’s relationship, through the lens of attachment perspective. The usefulness of attachment framework is proposed for a deeper understanding of couple functioning in presence of AD. The methodology used was a systematic search on electronic databases for published literature. A detailed search of the databases was conducted for articles published between January 1st 1993 and October 10th 2013: MEDLINE (via Pub Med), PsycINFO and PsycARTICLES (via EBSCO). It is shown that promising studies from the attachment perspective can be useful for the understanding of marital relationship in presence of AD. Finally, the interlacement among attachment, caregiving and sexuality systems in the couple managing this diagnosis is proposed.

 

Key words: Alzheimer’s disease, attachment, couples, elderly.


 

Introduction

Alzheimer’s disease (AD) is recognized as the most common and devastating of the neuro-degenerative diseases in the world. Recent data estimated that 15–18 million individuals suffer from dementia and in 2025 this number will increase to 34 million people. Commonly it is sustained AD regards elder patients and, consequently, it has scarce repercussion of marital functioning. However, in line with the recent literature, the necessity of investigating the impact of AD on marriage is examined in this paper.

Studies investigating the impact of the diagnosis for the couple’s system when one spouse had recently been diagnosed with Alzheimer’s disease have stressed that both partners need to be supported in front of this diagnosis (1). Both partners, in fact, have to be helped to create a joint construction which would enable them to make sense of their situation, have to find ways of adjusting to the changes experienced in their roles and identity, have to manage the losses they face in the early stages of dementia. Findings have suggested how the presence of AD in one partner can significantly affect ‘marital quality’ (2, 3). Intimacy levels tend to decrease (4, 5), communication becomes more difficult, enjoyment of each other’s companionship and reciprocity tends to diminish (6). Other studies have focused on the presence of distorted perceptions of interactions with their caregiver spouses, with a tendency to deny problems, perceptions of tension and disagreement over sexual issues (7). Overall, literature suggests a negative correlation between the progress of AD symptomatology and marital relationship quality, although the exact nature of this association is still unclear.

Attachment theory and AD

Attachment theory (8, 9) is widely recognized of an enormous importance for the establishing and maintaining of intimate relationships, playing a vital role throughout the life cycle.

Growing literature is focusing on the features of attachment system in later life (10-13) and in presence of chronic disease. The main rationale for the investigations on attachment in elderly and in presence of chronic disease can be found in the Bowlby’s consideration that attachment behaviour is especially evident in times of ill health or loss, circumstances that become more likely and/or frequent with ageing. In fact, under these conditions of elderly and illness, the need to seek closeness and proximity to attachment figures seems to be more natural and pronounced (12, 14).

In this paper the attachment framework is proposed to deeply analyze the complex issues linked to the marital functioning in presence of a partner affected by Alzheimer’s Disease. Attachment contributions have, in fact, the potential to further examine the changes in the couple’s system in presence of this complex disease, with a focus on the interlacement among the attachment motives that are activated by the illness condition, the sexual changes that are directly and indirectly linked to the peculiarities of this disease, and finally the caregiving role that is assumed by the healthy partner.

Methods

The methodology used was a systematic search on electronic databases for published literature on Alzheimer’s Disease and attachment. A detailed search of the databases was conducted for articles published between January 1st 1993 and October 10th, 2013: MEDLINE (via Pub Med), PsycINFO and PsycARTICLES (via EBSCO). The review used the following key words: « Alzheimer » AND « attachment » OR « sexuality » OR « couples » OR « partners ». We mainly included the studies that were published in

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peer reviewed journals. Once the searches were completed, the title, key words, and abstracts were reviewed for final selection. Unpublished data were excluded from these analyses. In total, 63 articles were initially identified as potentially fitting the selection criteria. From the initial searches, articles were excluded where the title and abstract made it clear that the paper did not fulfill the inclusion criteria. Collectively, these search strategies resulted in a total of 7 articles fitting the study inclusion criteria. Examing articles, only 3 were completely fitting the criteria.

Literature syntesis

Few studies have focused on the specific links between attachment and Alzheimer’s Disease. Miesen (15) has sustained that the experience of dementia erodes feelings of safety and security and activates attachment behaviors. In dementia, those attachment behaviors eliciting the proximity of caregiver, such as calling out or crying, are used in order to seek reassurance from familiar others. However, as dementia progresses, orientation to the outside world would tend to diminish and known others may begin to appear strange or unfamiliar. In an increasingly unfamiliar environment, the activation of attachment behaviors becomes a less useful way of finding safety and well-being. Wright and colleagues (16) sustained the increasing importance of attachment behavior among ill elders and their family members in presence of Alzheimer’s Disease. The authors sustain that the phenomenon of attachment links ailing older people to their environment, and that attachment is vital if human development is to continue. Browne and Shlosberg (17) have provided further evidence for the value of studying dementia in terms of reorganizations in the attachment bonds. The authors have sustained that ‘the growing interest in attachment theory in relation to this population reflects the recent wider shift away from medical models in dementia care and the increased emphasis on person-centered models, which address the subjective experience of the person with dementia (p. 137).

In the same line, a growing body of research is interested in examining the interlacement between attachment, sexuality and caregiving systems in couple relationships in elderly (18, 19). According to Magai (18), in elderly, individuals tend to activate the care-seeking dimension in more pronounced ways for the following reasons: ‘1) the various forms of chronic illness with which persons are afflicted in late life that require constant monitoring and/or care (e.g., diabetes, poor vision, and kidney disease); 2) growing limitation of activities and greater physical dependency caused by such illnesses as arthritis, circulatory disease, and stroke- related paralysis, among other conditions; and 3) anxiety and depression occurring in the context of bereavements of various kinds and the looming of the individual’s own death (p. 543).

Monin, Schulz and Kershaw (20) have recently sustained the role of attachment theory as a useful framework for understanding how caregiving dyads regulate emotions and maintain feelings of security in reaction to a loved one’s chronic illness. In their study, the extent to which the attachment orientations (anxiety and avoidance) of persons with Alzheimer’s disease (AD) and their spousal caregivers were associated with each partner’s report of the physical and psychological health symptoms of the person with AD was examined. Fifty- eight individuals with AD and their spousal caregivers were included in this study. Their findings indicated that individuals with AD who were high in anxious attachment self-reported more physical and psychological symptoms, particularly when their caregivers were high in anxious attachment. Also, caregivers perceived more physical symptoms in individuals with AD who were high in avoidant attachment. These authors highlighted the importance of considering the attachment security of both caregivers and persons with AD when considering how each partner views the psychological and physical health symptoms of the person with AD.

Cooper, Owens, Katona and Livingston (21) examined the role of attachment style on the higher carer burden and increased care recipient institutionalization. Eighty- three people with Alzheimer’s disease and their family carers were included in this study. Results showed that carers who were less secure or more avoidantly attached reported higher anxiety. The authors added that interventions that aim to modify coping strategies have a fundamental impact in reducing carer anxiety.

Our proposal: the interlacement among attachment, caregiving and sex in the couple with an AD patient

This literature review suggests that findings do not give a sufficiently clear picture of the couple functioning in presence of a patient with AD. For example, research has showed that patients often experience a roller coaster effect of sexual desire, which may be confusing for the caregiving spouse to understand or predict. Caregiving spouses may struggle to interpret different statements and behaviors from their partner and not challenge their own feelings regarding sex and other expressions of intimacy (22, 23). If a caregiving spouse suspects that his or her partner may have an impaired ability to willingly engage in sexual activity, role loss and role alteration may lead some caregivers to feel more like a parental figure and as a result they may report a sense of inappropriateness or even aversion to being sexual with their spouse (25). Duffy (26) emphasized the role of the caregiver’s perception of their emotional relationship with their AD spouse as the lens used to understand and make sense of the sexual aspects of their relationship. Wright (22) found that sexual activity was significantly related to the caregiving spouse’s better health and lower depressed mood. This datum seems to suggest that is the caregiving spouse perception the most indicative parameter of the differences in sexual sphere.

When ‘Inappropriate Sexual Behaviours’ (ISB) occur, making more complicated the couple management of the disease, couple adjustment become more frustrating. Inappropriate sexual behaviors defined as “sexual behaviors that are inappropriate, disruptive, and distressing and that impair the care of the patient in a given environment” (27, 28), consist of increased libido, masturbation, and/or exposing genitals and/or disrobing in public, excessive kissing, touching, grabbing, and sexual aggressiveness. Some data have indicated that ISB are quite uncommon in the marriage, occurring in only about 7% of AD spouses (29). However, it is unquestionable that there is an increasing focus on the repercussion of this issue difficult to be managed for marital relationship.

Attachment framework considering the interlacement among attachment, caregiving and sexuality, underlines that the caregiving features that the marital relationship assumes would relegate sexual aspect in a subordinate position. If sexuality indicates any combination of sexual behavior, sensual activity, emotional intimacy, or sense of sexual identity, it is suggested that emotional intimacy would be considered as the most engaged by spouses in the AD (30, 31).

From attachment perspective, several motivational systems interact in organizing marital functioning: attachment, caregiving and sexuality systems (24), which would operate in an integrated manner. The attachment system aims to assure to themselves protection when a situation of threat is felt, by keeping close to the attachment figure. Similarly to what happens in infant attachment, in adulthood the attachment system is not constantly in operation, but it is activated in times of danger or distress, when a partner is requested for caregiving, carrying out the functions of «safe haven» and «secure base». The caregiving system aims to offer protection through behaviors that promote proximity and well-being when danger is perceived. The activation of the caregiving system implies the ability to take care of the other significant figure through a series of behaviours such as showing an interest to a problem that is worrying the partner, validating their fears, reassuring them by greater closeness, but also encouraging them to face new challenges that may arise and instilling a sense of confidence in their qualities and skills. The sexuality system aims to assure the transmission of genetic heritage through the search of a partner to establish a sexual relationship.

These systems interact in complex and changing patterns in determining marital functioning. In this sense, at some stage (i.e. temporary), or in some couple relationships (i.e. stable), a system can «dominate» on the other two systems (24). For example, it is possible that in a couple, the sexual system has a certain importance in some phases, and it is then lost or regained over time. Similarly, there are couples where the sexual system is typically scarcely activated in the marriage, while the attachment system may have a very strong weight.

Within this framework, we suggest that chronic and degenerative illness, e.g. AD, determines a couple reorganization around an imbalance between the attachment, caregiving and sexual systems. In fact, AD can be considered a stressful condition potentially leading to a necessity of reorganization of the attachment, caregiving and sexual systems in the couple. The presence of this chronic disease can lead to an hyper- activation of the caregiving system, with a consequent marital functioning in which one partner «cares for» the other, but the other seems unable to provide support in times of need. The system might become rigid, especially in the presence of a chronic disease; the new organization imbalanced on the caregiving system might represent a point of no return. Partners might assume rigid roles, with a difficulty to exchange the functions. When a degenative chronic illness invades the couple life, the ill- partner arrives to assume the role of a care-receiver; it loses is role of attachment figure; sexuality can dramatically change in different stages of the disease. Rigid patterns of interaction may be determined, in which a partner exclusively takes on the role of caregiver and the other of care-receiver. In this case, if a partner assumes the exclusive role of caregiver, an imbalance in the caregiving system is created, shifting into an «asymmetric» position.

The AD condition is not a condition in which a temporary physiological imbalance of the three systems occurs. In AD a permanent reorganization is most likely to occur. The caregiving becomes the «central motor» of the couple’s functioning. The chronicity of the illness makes the system rigid on this unbalance. Spouses become the caregiver and with the exacerbation of symptomatology, intimacy and sexual sphere become compromised. In this situation, the couple dynamics may become almost exclusively focused on the «care».

We add that in presence of a chronic and degenerative disease as AD, if the caregiver is the spouse, the marriage inevitably loses the features of simmetry, reciprocity, and partners need to be prepared to this rigid couple organization. However, studies have attested that high level of intimacy remain in these relationship. By virtue of the cognitive difficulties experienced by an AD patient, the role, and thus the relationship, of spousal caregivers is in a constant change (25). These changes are often accompanied by strong emotional reactions that caregivers must cope with and with which they struggle to make meaning (26). In support of this, Fearon, Donaldson, Burns, and Tarrier (4) found that the level of intimacy in the caregiver–receiver relationship was strongly related to expressed emotion in the caregivers. Caregivers, who viewed their relationships as being highly intimate, were less likely to criticize or be hostile to their partners.

Sexual system in couples with an AD patients is particularly complex and is subject to dramatic transformation with the progress of the disease (27). Generally, AD affects the sexuality of about 80% of identified couples, with between 40% and 47% of the spouses indicating that the changes are problematic and represent a degree of maladjustment, while 28–33% state that the changes functioned to balance their sexual relationship (28-30). However, it is notable that sexuality sphere is itself subject to specific changes linked to the characteristics of the disease. Following the stages of AD, it is widely attested that yet during the first stage of AD the desire to have sex frequently increases or, alternatively, there is complete disinterest (31, 32).

 

Conclusion and future directions

Recent literature is attesting that attachment framework represents a useful way to contribute to the understanding of couple dynamics in AD. Despite the paucity of research examining the ‘couple dimension’ in this field, future studies would have an innovative impact on the understanding of couple’s management of the disease, and on the role of marital functioning and attachment dynamics on the adjustment of the couple to the diagnosis. Browne and Shlosberg (17, 33) have suggested that the growing interest in attachment theory can be interpreted as reflecting the recent wider shift away from medical models in dementia care and the increased emphasis on person-centred models, which address the subjective experience of the person with dementia.

Moreover, we sustain that understanding the psychological aspects of AD implies a deeper reflection on how the ‘couple dimension’ need to be further examined. Specifically, we propose to consider that the caregiving-careseeking dimension assumes a crucial importance. In fact, it is conceivable that the higher levels of distress and depression found in AD caregivers would be better understood on the light of the following aspects: 1) the sense of loss of the attachment bond for both partners; 2) the sense of rigidity of the unbalancement on caregiving system that the couple has to assume; and 3) the presence of significant ISB and other behavioral manifestations of the degenerative processes typical of this disease. The latter point focuses on how also sexual management of the couple assumes more complex trajectories.

In this sense, this focus on the couple dimension contains several clinical implications. It is important for medical and mental health professionals to know how the disease influences couple intimacy as well as the steps caregivers take to feel close to their spouse despite their spouse’s memory loss and cognitive impairment (34). With this understanding, professionals can better assist couples affected by AD when they seek help and support for dealing with the effects and progression of the disease. The recommendation is that professionals treating couples with an AD patient take a sexual history of the couple as well as assess the current status of the couple’s emotional and physical relationship (35).

 

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