Introduction

Dementia continues to be a pressing and concerning issue, with a significant impact on the various systems in which the affected person is involved. Diagnostic manuals currently prefer the term neurocognitive disorders, although the word dementia continues to be used as a synonym in most cases.

When combining the variables of grief, dementia, and caregiving, various research precedents emerge, such as the study by Calabuig (1), which aimed to observe the development of anticipatory grief in the relatives of patients with dementia and concluded that most of these individuals recognized that their loved one was in the final stage, just after going through anger, surprise, and fear. In turn, a study by Posse et al. (2) sought to analyze the degree of similarity between the symptoms of grief over death and grief due to cognitive impairment, as well as to relate the level of grief to the coping strategies of the primary caregiver. The equivalence between grief over death and grief due to cognitive impairment was confirmed.

For this reason, the researches that have explored the changes generated in the marital relationship and current cohabitation, as part of what has been called the marital bond, are scarce.

Between 1986 and 1991, American psychologist Pauline Boss began studies on ambiguous loss and ambiguous grief in caregivers, finding symptoms of depression associated with the perception of the absence of a loved one. The interpretation derived from the experience of an unresolved los-the person being physically present but not psychologically-without a ritual to help make sense of that void (3,4).

Boss (5) identified two basic types of loss: the first is grief for the person who is no longer there but remains psychologically present, as in cases of kidnapping and disappearance. The second, much more complex, involves physical presence but psychological absence, as in neurocognitive disorders, chronic mental illness, severe depression, and addictions. In all these situations, there is always a primary caregiver responsible for meeting the basic and psychosocial needs of the sick person, whose mental dynamics are gradually disrupted by the progression of the condition and the demands of caregiving.

It is very common for the care role to be assumed by the spouse of the affected person, who often interrupts their own life rhythm, which has negative repercussions on their health in all dimensions (6).

Thus, as the disease advances, the roles in the marital relationship are altered, which is considered ambiguous grief, since the definition of the role in a union depends on the psychological and symbolic conception that each individual attributes to it based on their cohabitation experience, which is lost when the person becomes ill (7). For Erausquin et al. (8), the interaction between the individual and their environment generates a set of experiences that enable interpretation, assessment, and understanding of reality. In this sense, experiences change due to the impact of the disorder on the connecting threads of the marital project.

Given the concern about what wives may be experiencing emotionally in their caregiving role, the general objective was to understand the experiences of ambiguous grief in spouses of patients diagnosed with dementia.

The results and conclusions of this study contribute to the development of psychosocial and family intervention programs for caregivers experiencing this type of grief, since, according to the World Health Organization (WHO) (9), cognitive impairment is one of the causes of disability and dependability among older people worldwide. Additionally, specific support strategies would be implemented to address changes in marital dynamics.

Methodology

This study used a qualitative approach which, according to Strauss et al. (10), produces findings without the use of statistical methods, as it focuses on obtaining and analyzing data from experiences, behaviors, emotions, and feelings. Consequently, the aim was to understand the experiences of the spouse of a person diagnosed with cognitive impairment, taking into account that each reality and context is unique. The study used a phenomenological method, explained by Guba et al. (11) as the understanding of realities from multiple and intangible mental constructions, whose forms and contents depend on the participating individuals.

The research process was carried out in four parts. First, the preparatory phase took place, in which the selection criteria for participants were defined, focusing on the criterion of being spouses of husbands diagnosed with cognitive impairment and fulfilling the role of primary caregiver. Snowball sampling was implemented, with the initial participants being consulted to inquire about the possibility of identifying other people who could enrich the data collection (12), resulting in a sample of seven participants.

Second, the field phase was conducted, during which data were collected through in-depth semi-structured interviews, following a script of ten questions that increased as the conversation progressed (12). Three interviewees were professionals, three were homemakers, and one was engaged in commerce; marriage length ranged from 20 to 55 years.

Third, the interviews were transcribed. Finally, the results analysis phase was carried out using grounded theory, which Strauss et al. (10) defined as a form of theory that emerges from systematically collected data and is a research process based on induction, seeking constant review and segmentation of the collected material with the aim of gradually creating an understanding of the reality experienced by these caregiver spouses.

To comply with the criteria of grounded theory, open coding was carried out, identifying concepts in the data and detecting inherent properties and dimensions. Subsequently, axial coding was performed, in which relationships were established between the previously identified categories and their respective subcategories, developed around the axis of a category with its corresponding connections (10), in order to identify emerging patterns and concepts that could give rise to a theory.

Trustworthiness criteria were taken into account in the execution of this qualitative study. Initially, dependability was considered, by submitting the work for review by qualified researchers. Likewise, the rigor of credibility was ensured by recording the interviews with the prior authorization of the participants. With respect to confirmability, memos and notes were taken during the fieldwork, and finally, to meet the criterion of transferability, the characteristics of the context, the individuals under study, and the specific attributes of the phenomenon in question were detailed (12).

With respect to the articles of the Código de Ética Profesional del Psicólogo (Code of Professional Ethics of the Psychologist) in Venezuela (13), to ensure ethical research, Article 60 emphasizes the importance of guaranteeing the anonymity of the responses of the individuals subjected to research, so in this study only the numbering of the interviewees was used to identify responses.

Results

The findings related to ambiguous grief gave rise to categories associated with the experience of loss (seeing the same body with another essence/the spouse is no longer the same), the experience of grief (felt daily/ changes in communication), and reframing (alienation/ new functions).

The diagnoses suggested in the medical reports of each spouse were as follows: moderate cognitive impairment (E1), major neurocognitive disorder (E3, E4, E5), major neurocognitive disorder due to Alzheimer’s disease (E6), frontotemporal neurocognitive disorder (E2, E7). The verbatim statements expressed by the interviewees (E) served as a guide for understanding their current situation.

Initially, the wives valued the physical presence of their husbands, although they showed significant changes in their identity: “He goes from being a person with certain characteristics, a way of thinking, and certain things, and suddenly you see that body, but what is inside is no longer what it was” (E2). In this context, the caregivers experienced a present-day lack of recognition of their life partners: “He is a person with whom one does not feel happy or proud to have by one’s side” (E7), as well as a loss of admiration that was one of the reasons for falling in love: “… he is no longer the person whose comments I liked, a person I admired, an intelligent, brilliant, creative being” (E7).

In some cases, a childlike view prevailed: “He’s like the little boy of the house” (E3). “Suddenly he becomes absent, his mind drifts, you’re talking to him and I think he’s just another child” (E4). “He is useless, completely absent” (E4).

In addition to this, they described safety risks: “In his desperation at midnight, I went into the kitchen to turn it off because he was turning everything on, and when I turned off the stove, he grabbed me from the front and hit me, breaking my nose and teeth” (E4). “He pulled a gun on my son and me the day he found out he no longer had any pills” (E2).

The fear of loneliness and the inability to live alone emerged: “But I do not imagine life without my husband, and it is fear of the unknown, and it is true that I am taking life calmly, but no, I cannot see myself without him” (E4). “I feel like I am losing my partner; I do not know when he will leave, but I will be left alone” (E3). The hope for improvement faded: “I had the hope that he would improve, even if only a little, but the doctor told me that this is progressive” (E4).

The wives also mentioned substantial changes in the couple relationship due to the passage of time and the disease, including intimacy and sexual life: “Affection, more than love, is affection, because love is lost, or it transforms” (E3). “And well, many times the relationship is successful, that is, the act, and many times it is not, and that makes it increasingly difficult to feel desire, because even though physically he is exactly the same, mentally he is no longer the same” (E7).

Three groups of couples were identified: in the first, the sexual bond had already deteriorated before the disease: “I stopped having sexual relations with him because I did not think it was fair that if he had a woman on the street, he also wanted to be with me” (E4). In the second group, despite occasional success in the sexual relationship, dementia hindered the desire for intimacy due to the dissociation between the physical appearance and the mental alteration of the spouse: “Well, often the relationship is successful, that is, the act, but often it is not, and that makes it increasingly difficult to feel desire, because, although physically they are exactly the same, mentally they are no longer the same” (E7). In the third group, the deterioration of the spouse completely interrupted this experience: “Since he suffers from heart problems, I have stopped having sexual relations with him, so it is no longer the same relationship as before, and that has affected me quite a lot” (E3).

Given that dementia is a chronic disease, the interviewees expressed experiencing a form of grief that is processed daily and prolonged over time: “I carry that grief with me every day, I hardly talk about it and it makes me cry” (E3). The deterioration in communication accentuated the caregivers’ distress: “Sometimes I am alone with my husband and I try to talk to him and he no longer understands me or can no longer express himself” (E4), reflecting the stage of the disease the husband is in: “I do not see it so much as grief, because I do not feel it as grief” (E4). “He is my partner, I think he still has about ten years of life left, I can still have a conversation with him, even if he does not remember five minutes later” (E3).

The psychological impact was evident in some cases: “Inside, there came a time when I felt like I was in a horrible hole that I did not feel I had the capacity to get out of” (E2). “Now I feel like this, sadder, my spirits are lower” (E5).

To cope with this process, most of the interviewees reframed the image and perception of their husbands: “I am working not only on myself, but also on reframing things with him, because he is not the same person” (E2). “For me, he is not my husband, nor is he a child because he is not my son, but he is a person I have to take care of” (E2). In addition, the figure of masculinity, protection, and authority of the spouse changed significantly: “He was the one who protected me, but now that has totally changed, I feel like I am the one who protects him” (E3). “I have taken on all of his roles, all of them. I decide where we go, when we go, I take care of everything in the house, which I have never done before” (E7). In most cases, they took on household maintenance: “Now I consider myself more independent, I take more care of the home, I had never worked and now I work in school transportation together with my daughter,, because life has changed us” (E4). “Now I have to manage more than before, now I have to take on that responsibility, it is no longer him who takes care of it” (E6).

Discussion

According to Fernández (14) and Cerquera et al. (15), dementia is characterized by the constant presence of the unknown and by change, which generates fear, sadness, and pain throughout the care process. The changing reality of the wife caregiver is much more complex due to the reframing of the marital bond, the change of roles, and the diversity of losses, despite having the physical presence of her spouse, even though he is mentally distant from her and her environment.

In line with these reflections, Boss (3) proposed that ambiguous grief manifests when experiencing the difficulty of dealing with the gradual transformation of the cognitive abilities, personality, and behavior of the loved one, without there being an immediate physical loss. In this sense, the wives indicated in their accounts the transformation of the couple as a consequence of the disease, as well as the decline of hope.

The most significant experiences were associated with progressive losses, which would lead to the understanding that the sick person would undergo substantial behavioral changes and that the chances of improvement would be minimal (16).

The identity of the spouse is subject to cognitive and functional changes that, in most cases, can be predictable; however, the behavioral changes associated with neurocognitive disorders are variable and have a diverse impact on daily life (17); for this reason, some of them reported concern for their physical integrity due to the excessive and violent responses of their husbands, depending on the diagnosis.

A certain defense of the bond could be identified, with clear fears of losing their partner due to the years of marriage and the accumulation of shared life experiences, even though the disease had already blurred the relationship. There are many factors that can influence this defense, including marital obligation due to the marriage contract and the duties of a wife (18).

One of the most significant losses that caregivers had to face was the lack of reciprocity in contact. It must be assumed that the bonds with the sick person will change and that the roles they play in the relationship will change and even be reversed (16). The alliance or bond depends on the health status of each individual, since emotions, feelings, and perceptions influence this exchange (19). Faced with this reality, some perceived their husbands from a childlike perspective and as totally helpless, due to changes in simple and instrumental activities of daily life.

In marital life, there is a fundamental aspect related to intimacy that the interviewees mentioned, making clear the discomfort they experienced in sexual encounters. In relation to this, Matusevich et al. (20) stated that a person with dementia loses the ability to meet both their own needs and those of their partner, facing difficulties in establishing connection and in having an appropriate sexual reaction.

López (21) explained that, for the wife caregiver, the increased dependability of her partner influences her sexual feelings toward her spouse. Some caregivers reported being too fatigued to engage in sexual intercourse, and their mental exhaustion hindered their participation in the erotic dimension.

It is worth underscoring aspects of female sexuality that are intertwined with emotional connection and the holistic experience of the encounter, embracing pleasure through self-determination and willingness (22). However, this experience in women is disrupted by contact with a body no longer accompanied by the identity of the person who once inhabited it.

The spouses became aware of the grief, viewed it as part of this stage they have taken on as caregivers, experience it daily, and link it to the deterioration of communication and the loss of admiration for their spouses. The hope for improvement waned and was replaced with the intention to alleviate the partner’s suffering.

According to Young et al. (23), the communication abilities of individuals with dementia progressively decline as the disease advances, affecting the processes of expression, reception, and use of communication channels. In caregivers, this decline led to a diminished ability to process information and evoked emotions such as fear, impatience, and disorientation when observing their partners becoming increasingly confused.

When the ill person is in the early stages, they retain greater independence and preservation of cognitive faculties, so the caregiver’s perception of loss and grief tends to be minimal, which in some cases fosters improved communication and interpretation of intentions. This finding supports the results of Adams et al. (24), who identified that caregivers of patients in the terminal stage of dementia often display more symptoms of anticipatory grief than those in intermediate or early stages of the disease.

Undoubtedly, the caregiving partner experiences emotional fluctuations arising from the uncertain scenarios they face. This makes it increasingly exhausting for caregivers to sustain the empathetic understanding and calmness required in distressing moments. Fear and sadness accompany the sense of being in constant service.

In some cases, gratitude was expressed toward the now-ill life partner, possibly influenced by religious and spiritual factors that aid in accepting the changes (25). Likewise, knowledge about the disease helps in tolerating painful emotions, allowing for an understanding of the losses faced gradually (26).

All of these transformations led the wives to become aware of a reframing of their husbands which, according to Arias et al. (27), is the capacity to assign a different meaning to the past based on a new understanding of the present. For Boss (3), this serves a valuable purpose: to name the ambiguity, to acknowledge that instead of being a wife, one is a caregiver, because this helps avoid feeling overwhelmed or abandoned.

The roles within couples were also altered by the illness; previously, they identified with functions that, according to Esquila et al. (28), could be described as traditional, reflecting a woman dedicated to cleaning, cooking, caring for, and raising children within the home, while the man focused on earning income, holding authority, and making decisions within the household. However, with the onset of the pathology, women undertook tasks ranging from protection and decision-making to managing household maintenance and finances. Leiva et al. (29) noted that this protective and benevolent attitude that caregivers had to adopt, driven by behaviors associated with the earliest stage of human life, which the patient embodies, has in some cases led the spouse to view her husband as a child requiring constant care and attention.

In this way, the concern remains to continue exploring the factors that involve the wife in her caregiving role. The scope should be broadened to include prior variables linked to the quality of the relationship and forgiveness in the couple’s marital history.

Conclusions

The experiences of seven wives who assumed the role of primary caregivers for their partners yielded information related to multiple daily losses, ongoing grief, and the reframing of experiences.

The main losses were linked to significant changes in the husbands’ personality and behavior, leading them to be perceived as helpless and childlike in their conduct, which hindered intimacy and successful sexual connection. Likewise, a long marital history prevented these women from envisioning themselves as independent and alone in the future, even though their marital life was no longer the same.

The grief differed from that which follows a physical loss, as it was indeterminate and imprecise. Communication deterioration between the couple, caused by the illness, reduced opportunities for connection and for strengthening the relationship. In this context, the woman assumed the role of protector and household manager, with a substantial reversal of the roles that had previously belonged to their husbands.

Faced with such diverse realities, the wives reframed their experiences, seeking to give them a different meaning. They honored the marital bond through service and care, although progressively they came to assume solely the role of caregivers, which helped them to understand the ambiguity of the situation and their husbands’ dependability on them in each of their actions.

Conflicts of interest

The authors declare that they have no conflicts of interest.

Funding

No external funding was received by the authors for this research.

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Notas de autor

vtirro@unimet.edu.ve

Información adicional

How to Cite.: Tirro-Arias VI, Revilla MJ, Rodríguez J. Ambiguous grief in wives caring for spouses with dementia. MedUNAB [Internet]. 2025;28(1):58-65. doi: https://doi.org/10.29375/01237047.5160

Author Contributions: VITA. Conceptualization, review and editing, resources, visualization, supervision. MJR. Original draft, methodology, formal analysis, data curation, project administration. JR. Validation, research.

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