Couples' experiences with early-onset dementia: An interpretative phenomenological analysis of dyadic dynamics

Abstract

Objective

The growing interest in early-onset dementia has attracted attention to the situation and experiences of the caregiver, most often the spouse. Several qualitative studies on caregiving spouses have underlined the importance of the feeling of loss, the change of role reported by the caregiving spouses, and the strategies used to protect the person with dementia, all of which raise the question of the relational dynamics at play in these dyads. The present study on 16 couples examines the experiences of each partner, as well as the kinds of interactions taking place within the dyad and how they have evolved since the disease began.

Design

An interpretative phenomenological analysis was conducted on dyadic semi-structured interviews.

Results

Seven axes emerged from the analyses, showing that control over symptoms gradually leads to deterioration of marital interactions and to the components of marital dissolution.

Keywords

couple dyadic dynamic early-onset dementia interpretative phenomenological analysis qualitative study

Introduction

Keeping a person with Alzheimer's disease at home requires an ever-increasing amount of care, which is generally provided by the family, usually the children or the spouse (Stommel, Collins, & Given, 1994). The time devoted to care and the disorganization of daily activities that ensues are good predictors of the load carried by the caregiver, which is heavier when the two people live together and when the person with dementia is the spouse (Kim, Chang, Rose, & Kim, 2012). The presence of behavioral disorders, the poor social support system, and the lack of available resources also heighten the feeling of being burdened and complaints about depression (Coen, Swanwick, O’Boyle, & Coakley, 1997). Deterioration of the quality of life, somatic disorders, and depressive symptoms are the consequences most frequently reported by caregivers (Schulz, Boerner, Shear, Zhang, & Gitlin, 2006), to the point that it is estimated that over 80% of them are living in a state of distress (Alzheimer's Association, 2006). No matter what age the persons are when the disease first becomes apparent, the amount of care needed always grows over time, while the needs of the caregivers are neglected (Daire, Torres, & Edwards, 2009). In the long run, the intensity of the caregiver's distress is a key factor in the decision to place the partner with dementia in a nursing home (Steadman, Tremont, & Duncan Davis, 2007).

A large body of research has focused on persons who are 65 or older at the onset of dementia and the difficulties encountered by their caregivers (Etters, Goodall, & Harrison, 2009). Comparative studies have pointed out higher distress levels among caregivers of young individuals with early-onset dementia (Freyne, Kidd, Cohen, & Lawlor, 1999) and greater perceived difficulties due to behavioral disturbances of person with dementia (Arai, Matsumoto, Ikeda, & Arai, 2007) than the caregivers of older persons with dementia.

Side of the person with dementia, when the disease first becomes apparent, the early stages of dementia are very difficult because they are aware of their impairment, intellectual change, memory failure, etc. which are accompanied by feelings of frustration and depressive affect (Robinson, Clare, & Evans, 2005). Younger people are affected differently than older people. They have had less opportunity to achieve their life goals and they have difficulty accepting that they have a disease that is most often associated with old age (Chaston, 2010). They lose their jobs and the associated benefits, they lose their independence and they isolate themselves socially (Beattie, Daker-White, Gilliard, & Means, 2004). They can no longer drive, ensure domestic and parental tasks (Tindall & Manthorpe, 1997). All these changes can cause a decrease in self-esteem and depression (Beattie et al., 2004).

To cope with these difficulties, the both partners devise individual and dyadic adaptation strategies (Clare, 2002; Molyneaux, Butchard, Simpson, & Murray, 2012; Robinson et al., 2005) like normalizing, denial, avoidance, and non-anticipation of the future. Caregivers use these strategies to keep control of the situation and emotions, and persons with dementia to minimize their problems and to maintain self-esteem and their lifestyle (Robinson et al., 2005).

Again, regardless of age, the quality of family relations (Heru, Ryan, & Iqbal, 2004) and the couple's relationship are important predictors of the caregiving spouses’ feeling of being burdened. In addition, caregiving spouses who say that their couple relationship was already problematic before the disease subjectively perceive their partner's symptoms as being more invasive and more severe than indicated by objective measures (Pushkar Gold et al., 1995). And caregiving spouses who report little marital intimacy and unresolved interpersonal problems before the dementia began experience a heavier burden (Morris, Morris, & Britton, 1988). In contrast, a satisfying premorbid marital relationship is associated with a lesser feeling of being burdened and a more positive perception of the challenges to meet in the course of the disease (Steadman et al., 2007).

Although the quality of the couple relationship beforehand will affect the caregivers’ experiences, the onset of the disease and its progression will have an impact on both the couple and the dyadic relationship. Insight into dyadic functioning during the disease has been obtained by studying the discourse of caregiving spouses of persons with dementia, both old (O'Shaughnessy, Lee, & Lintern, 2010) and young (Ducharme, Kergoat, Antoine, Pasquier, & Coulombe, 2013) or couples over age 65 (Robinson et al., 2005). The couples studied describe a strong feeling of loss: loss of memory, independence (for both partners), roles, projects, mutual understanding, sharing, and former lifestyle (Ducharme et al., 2013; Robinson et al., 2005). The couple relationship changes as the caregiving partners go from an equal-status rapport to an asymmetrical dependency relationship that generates tension (O'Shaughnessy et al., 2010). Tension gradually rises within the couple, and both partners withdraw, little by little, from family and friends, and reduce their range of activities (Lockeridge & Simpson, 2012). The caregivers and the persons with dementia alike may exhibit some degree of ambivalence about the disease: they fluctuate between acceptance of the situation and its progression, and the fear of having to live with the disease accompanied by uncertainty about the future and about how the disease will evolve (O'Shaughnessy et al., 2010).

These studies have identified not only the caregiving spouse's own suffering but also a negative perception of the spouses with dementia and profound changes in the how the partners interact within the dyadic relationship. Given that these results have been obtained from the discourse of the caregiving spouses alone or couples over age 65 it would seem important to approach this issue—and if possible deepen our understanding of it—by analyzing interviews with both partners. To this end, we interviewed “couple” dyads in which one of the partners has early-onset Alzheimer's disease, i.e. diagnosed before the age of 65 and the discourses were analyzed together using a qualitative approach. Our objectives were to identify the couples' difficulties and needs, understand the impact of the disease's onset on the couple's relational dynamics, and provide evidence of the partners' individual and dyadic adjustment modes for coping with the disease.

Method

Participants

Sixteen couples participated in the study. For seven of the couples, the caregiver was a woman. At the time of the interview, the mean age of the caregivers was 57.4 (SD = 4.2) and the spouses with dementia, 57.3 (SD = 4.1). Between the onset of the first signs and the time of the diagnosis, an average of two-and-a-half years had lapsed. The mean score on the Mini-Mental State Examination of the partners with dementia was 19.1 (SD = 5.5). The two partners had been married for an average of 30.7 years (SD = 8.5). The persons with dementia are still not employed, but seven of the caregivers were still working and four of the couples still had a dependent child.

Procedure

The participants were recruited with the help of the Regional University Hospital Center of Lille in northern France. The inclusion criteria were as follows: the person with dementia had to be a probable case of Alzheimer's disease, the caregiver had to be the spouse, the two partners had to live together in their home, the first signs of the disease had to have appeared before the age of 65, and the person with dementia had to be at most 65 years of age when the interview was held. In addition, the person with dementia should have sufficient verbal ability to participate in a research interview which required understanding the questions, answering them, and interacting with the caregiving spouse and the interviewer. These abilities were determined by the score on the last Mini-Mental State Examination (19 or above) performed by the neuropsychologists of the Regional University Hospital Center of Lille and by the abilities' assessment of the person with dementia by the caregiver at the moment of the first contact by phone when dyadic interview was proposed.

The study was validated by the Committee for the Protection of Persons (ethics committee). Each of the 32 participants was given an information letter, and if they agreed to participate in the study, signed a consent form. The dyadic interviews took place in the home. They were semi-structured and the topics addressed dealt with the onset of the disease, the difficulties encountered, current needs, coping strategies, and the evolution of the couple relationship. The interviews were conducted by a psychologist and lasted an average of 1 h and 15 min (range: 43 min to 2 h and 40 min). They were recorded and transcribed in full.

Data analysis

The interview transcriptions were processed using an interpretative phenomenological analysis (IPA) method. The IPA allowed us to explore the participants' experiences, the meaning they gave to those experiences, and the underlying psychological processes (Smith & Osborn, 2003). This type of analysis grants a central role to interpretation. It is based on each individual's subjective account rather than on an objectified description of facts. Accordingly, the researcher attempts to gain access to the unique universe of each participant. In compiling its analytic account, the method brings to bear the thought processes of both the participants and the researchers (Osborn & Smith, 1998; Smith, Flowers & Osborn, 1997). In the area of dementia, this method has been used so far to analyze the discourse of care providers (Ducharme et al., 2013; Lockeridge & Simpson, 2012) or persons with dementia (Langdon, Eagle, & Warner, 2007); other studies have utilized individual interviews with both partners (Clare, 2002). The originality of our study lies in the fact that we applied the IPA method to dyads. This approach should provide evidence not only of the experiences of each partner but also of the differences between what each one is living through, and their points of divergence and convergence. We noticed words employed, expressions, vocabulary, emotions associated with the situations, and with disagreements expressed directly or indirectly both after the question and throughout the interview. This type of analysis has been tested in the context of various diseases: breast cancer (Antoine, Vanlemmens, Fournier, Trocmé, & Christophe, 2013), depression (Harris, Pistrang, & Barker, 2006), and multiple sclerosis (Boland, Levack, Hudson, & Bell, 2012). In our study, the interview brought the two spouses together in order to capture their interactions about their individual and shared experiences.

In line with the steps proposed in this method of analysis (recorded interviews, transcribe, analyze the corpus, identify main themes, and sub-categories for each theme), two researchers annotated and analyzed each interview transcription first individually. They took notes about the topics detected and the individual and dyadic processes identified. Next, they got together to share their analyses with each other, discuss their interpretations, further reflect upon the data, and to agree on a common interpretation. Finally, the researchers drew up a general map of the couple's mode of functioning, which completed the analysis cycle. Then the two researchers went on to analyze the next couple. Based on all 16 outlines, they drew up a list of all the salient phenomena describing the experiences of each partner and their adjustment and interaction processes.

Results

In the present article, we report only the results concerning the two partners’ experiences of how the disease has affected the couple and the ways in which they have adjusted to it. The various processes and topics identified were grouped into major categories; these in turn were grouped into seven main axes: protective behaviors; divergence about help; difficult to implement adaptation; from protection to control; we do not recognize each other; two strangers under the same roof; there is no couple anymore, it is over.

With the onset of the first signs, the actual diagnosis, and the progression of the symptoms, the caregiving spouse and the person with dementia see a gradual change taking place in their habitual lifestyle. The increasing severity of the symptoms and the growing responsibilities for the caregiver lead the two partners to devise strategies to avoid having to face the disease and the negative emotions it entails. They do not perceive the long-term deleterious effects of the disease on the couple.

Protective behaviors

As the deficiencies get worse, the spouses with dementia run the risk of not reacting properly in dangerous situations and putting themselves in danger. The caregiving spouses, in a state of alert, are all going to develop a vigilant and protective attitude. The psychological impact of the deficiencies is well-identified and for the caregivers, it is a question of helping their spouses with dementia cope. What sets in is a support process experienced as natural and benevolent.

Couple 12: I always try to have her make her own decisions, see for herself, and then if there's something that doesn't work, I'll make her see a little of the impact, which has happened, but I try never to let her fail. (Caregiver)

In most of the interviews, the risk of collapse was present and the couples tried to resist by making use of some or all of the reactions described above. During three of the interviews, the caregivers’ distress was very pronounced and sometimes openly expressed (gloomy thoughts, thoughts about suicide). In order to protect the caregiving spouse and their marriage, three persons with dementia are going to put aside their own difficulties and try harder to make the symptoms less conspicuous and less burdensome.

Couple 13: I'm well aware that there are some things that are not working at all anymore, that I no longer react as I used to. I realize it but I avoid talking about it, I avoid showing it too much and [talking to his wife] it's for you, I know you're going to worry about it. (Person with dementia)

Couple 16: As far as I’m concerned, I have to put up with her for her to feel well, but I know that from time to time, I must comfort her, she is a little unnerved, she does not like to see me like that (Person with dementia)

Divergence about help

The two partners develop different perceptions of the symptoms, the spared abilities, and how much help is needed.

Couple 15: I have a greater autonomy margin than she thinks, but there again, I do not want to upset her, so I often give in (Person with dementia)

Four individuals with dementia talk with pain, which can be a source of frustration, anxiety, discomfort, and/or irritation and receive help can be embarrassing and difficult to accept.

Couple 07: I don't recognize myself anymore … I was working, I was doing the shopping, everything, I did everything, everything, everything, and then, between one day and the next, nothing left. […]. At the beginning I told myself, this is maybe going to end, but no, it's not ending. (Person with dementia)

Couple 16: For me at the beginning, I was nothing any longer, just a sissy. (Person with dementia)

Couple 11: There are times where I can’t find my words and then it winds me up. (Person with dementia)

Others seem not to realize the extent of the symptoms and seem to think they do not need help. They do not talk about their symptoms and they do not talk about their needs. So it is very difficult to know what level of help they need and it is difficult for the caregivers to adjust their help.

Couple 01: Now with his disease I would say he's more irritable, more aggressive. That's something that's changed, but I think he doesn't realize it. (Caregiver)

This divergence within the couple is an early source of difficulty. The caregiving spouses are going to provide help that will sometimes be refused by the persons with dementia, who see themselves as being in good health, or at least as still having sufficient autonomy. Little by little, the caregivers have to be doubly watchful, with respect to the partner's symptoms and also the adherence to the safeguards put in place.

Difficult to implement adaptation

The caregiving spouses will discover another quite destabilizing phenomenon: the changing nature of the symptoms and of the discourse of the spouses with dementia about their symptoms. An action that is possible one day will be impossible the next, but will become possible again the day after that. The caregivers will nourish the feeling that the persons with dementia are letting themselves go, allowing the disease to dominate, even though it would be possible to fight it if the persons with dementia summoned the necessary resources.

Couple 07: Today, I’m going to put on my jumper right the first time! On the following day, if I want to put on the same one again, I might not be successful, whereas other times, I may get it right straightaway (Person with dementia)

Couple 08: Some days, it’s alright, I’m happy, but at certain times …. I must admit […] It varies … (Person with dementia)

Couple 05: What I often say to her is you mustn't keep saying “I'm sick, I'm sick” and let yourself be overpowered by the disease. A person may be sick, agreed, but you have to try to keep your spirit, your energy, otherwise the disease gains ground much faster than it should. (Caregiver)

Couple 01: I think he knows. When he realizes he's not well, he's not going to try. He'll sink in deeper, he'll look outside. Myself, I see it, when he does that, it's because he's not okay. (Caregiver)

These fluctuations in symptoms, mood, and extent of adherence to the help provided, create ongoing uncertainty and force the caregivers to constantly adapt, by letting do things when the person with dementia is capable and helping when the person with dementia no longer knows how. Among the 16 dyads, only two were able to let less fossilized and more flexible functioning appear, supported by the acceptance of the changes undergone and the developments to come.

Couple 08: She participates, I ask her to participate, so she puts out the plates, she clears the table, or she does the cooking, too, if I'm there with her. Well, it's so she can still participate. (Caregiver)

Couple 11: If you wear yourself out fighting against the wind, you're going to lose, it's obvious, so you have to make do, you have to change your bearing, etc. And you have to set things up so you can go forward calmly. (Caregiver)

The majority of caregivers are not able to be flexible and they help all the time. Insidiously, their protective caring evolves toward more rigid helping behaviors. This lack of adaptation will increase tension between the two partners.

Couple 15: The thing that's extremely tough for me is that I'm forced to take care of things I didn't take care of before, it's a lot. […]I'm also forced to take care of things I didn't used to have to take care of […] I'm in charge of protecting him and helping him. (Caregiver)

The caregiving spouses scrutinize not only the symptoms, but also the mood of the person with dementia, whose fluctuations directly affect their own emotional state and mood. If the person with dementia is doing well, the caregiving spouse will too. Thus, they get the feeling that their well-being is totally escaping them, since it seems to depend on the willingness of the person with dementia.

Couple 08: When I see her giggle or burst into laughter and she's happy, for me it's a good day. I say tomorrow we'll see. Then the next day, if she's a little sadder, I say, oh, it's a sad day. (Caregiver)

From protection to control

Up until then, the help provided was aimed at compensating for the symptoms, slowing down the progression of the disease, and helping the persons with dementia avoid being confronted with failure. But the persons with dementia express indifference or hesitation about their acceptance of the help of the caregiver, so the caregiving spouses use persuasion or invent other strategies to impose their perceptions and reduce their own domestic load. The persons with dementia, backed into a corner, use whatever remaining abilities they have to cope, and to put their own desires and dignity in a good light. For half of the couples, the caregiving spouses look ahead more and more, filter information, and let the persons with dementia do less and less. This will widen the gap between them and increase the tensions that will take over the relationship.

Couple 11: Me, I want to do it. [Talking to her husband] I told you there are things I can do, and I don't want anyone else to take over. (Person with dementia)

Couple 11: [replying to the interviewer] You have to follow behind her and do everything over! It's useless, totally useless. I'd rather she did nothing. (Caregiver)

The initial purpose of these strategies gives way to another goal, which seems to be a generalized avoidance of all negative emotions linked to the disease. It is no longer the domestic load that has to be lightened, but the emotional load, as if the caregiving spouses were becoming intolerant to all forms of tension. The initial aim of protection is lost, and caring strategies have been intensified, distorted, and diverted from their original purpose to look more like total control. The caregiving spouses are only partially aware of the impasse in which the dyad is involved.

Couple 08: Post-its have been placed, to warn me not to make mistakes […] and there are photos as well […] Because I used to put my stuff there and then one day, my husband got angry and he said he was going to do little things, but I did not know he would go that far! But it’s still alright. (Person with dementia)

Couple 14: The further ahead you see, the better the day goes because there will be that many annoyances you won't have. […] I decided it was preferable to foresee things […] I'll be running the show. And so that's the deal, my life today amounts to controlling her behavior. (Caregiver)

We do not recognize each other

In a third of the couples, the involvement of the caregiving spouses, increasingly interventionist with increasingly rigid protective behaviors, alters the way the persons with dementia looks upon them. The caregiving spouses feel they are being viewed as someone who is watching, controlling, giving orders, infantilizing, and belittling. They are troubled by this change, torn between the obligation to continue the necessary evil, i.e. the controlling deeds, and the risk of losing the other's affection. The caregivers feel guilty and see in the partner's behavior a misplaced pride, a lack of recognition, or even rejection of them as a person. They look for this recognition by seeking alliances with the family or with health professionals—thereby running the risk of devaluing the persons with dementia or setting them up for failure—in order to prove the legitimacy of the help provided. Our interviewers recorded statements by several caregivers looking for validation of their behavior.

Couple 07: I don't ask him anymore … because I know that sometimes, if I'm looking for something, I sense that he's stressed out because he's watching, he's checking me. And I don't like that, it's stressful. (Person with dementia)

Couple 15: Hey, I want to protect him. Just avoid problems, and instead he actually gets the impression that I'm treating him like a child […] If I don't do it, I'm the bad wife … and if I ward off incidents too carefully, I'm also the bad wife, the one who humiliates him, belittles him, it's like hell. (Caregiver)

Couple 05: If only I had a wife who said to me “I have a nice husband, I can't do much anymore but he makes my supper in the evening, does the shopping …” If only I had this kind of recognition I'd say “You're useful, that's already pretty good”. […] The only thing she sees is that I complain. (Caregiver)

This process ends up in a rupture that manifests itself by the discovery that there has been a change in the way the spouses see themselves, not only in how each one looks at the other, but also in how each one looks at himself/herself.

Couple 10: I’m not patient any longer or my disease is taking over, I don’t know, but I’m not as patient as before (Person with dementia)

Couple 06: She's not the same woman at all! No! She's far from being the same woman. I'll tell you frankly, for me, for the time being, you could say I'm with a stranger. (Caregiver)

Couple 03: It's not just you, it's on both sides. That's what's changing our everyday lives. I used to have lots of patience, everybody would say “You're so patient”. I was always very patient. But now I realize, I try to tell myself “keep calm” but it's not easy. (Caregiver)

Two strangers under the same roof

The outside world is experienced as dangerous or intrusive. The individuals with dementia feel vulnerable, at the mercy of criticism and mockery, or of shocked and embarrassed looks from friends who knew them when in full possession of their faculties. The caregiving spouses want to protect their partner and are subject to intrusiveness and criticism from their social circle concerning their caregiving and their decisions. Under various pretexts, including being afraid to disturb, being a burden, the fact that their children (often in their thirties) have their own families to raise, or that no one can really understand what is happening, a third of the couples distance themselves from their families.

Couple 16: We try to be discrete. This way, nobody knows, nothing at all, we get by as we can (Person with dementia)

Couple 09: I don’t feel like going out […] I’d rather stay home, in my house […] I’m always afraid, I’m afraid of everything (Person with dementia)

Couple 07: Right now, it's about my grandchildren that I feel bothered, because I used to do a lot with them [sobbing]. It's nothing much, they see a notebook, “No, Grandma, that's not how you spell it”. That's what bothers me. (Person with dementia)

Couple 12: I feel rejected a bit, I must admit […] I'm a bit ashamed, I’m telling you how I feel, it is embarrassing […] I don’t want to talk about it too much (Person with dementia)

Couple 13: All the time they'd say, he's doing better, with his new treatment things are better, it's not as bad. But no, I would say, it's a disease that's going to progress. But they didn't understand that it's a disease that's irreversible. […] I had to get angry to make them understand … (Caregiver)

At the same time as the social circle is kept at a distance, they increasingly isolate. Four couples, who report having been independent from each other until then, experience this closeness as a positive thing. Time spent together lasts longer, seems richer, and provides an opportunity to share more than they were able to do in the past, even through simple activities. They have the impression that it reinforces their bond.

Couple 01: We got closer. […] Here it's often just the two of us. I used to go out shopping by myself. He was off at his job. On Sundays, weekends, I was never there because I was working. Now there are always two of us, we go everywhere together. (Caregiver)

Couple 14: We're going be homebodies even more than before because today, I sense that our happiness together is here, it's the two of us, just the two of us. (Caregiver)

These couples are a minority. For most of the couples, the restriction of social circle is experienced dramatically because the onset of the disease upsets the dyad's functioning mode and the growing amount of control and tension will gradually distance the partners from each other. The awareness they both have of this deterioration spurs them to distance themselves even more so as to reduce the frequency of conflicts, but the price to pay is a deep feeling of loneliness. The partners are both isolated from their environment and isolated from one another.

Couple 15: We get annoyed faster, both of us, so now we tend to stay away from each other a little […] We were never an inseparable type of couple because we have very different likes and dislikes, that never bothered us. And here, it's true that we might be moving away a little because the sparks are dying out pretty fast. (Caregiver)

Couple 02: I can't explain it. It's something that just crept up. I think in any case that it must have to do with this disease. (Person with dementia)

Already diminished by the disease, communication suffers even more from this distancing. Six of the 16 couples do not talk anymore and exchanges get rarer, which also reduces the possibilities for marital readjustment. The silence weighs them down all the more since the two partners live together. Even though there are two of them, they feel like they are alone, each one in his/her own world, sometimes literally living on different floors, unable to find a way to approach each other. By reducing the risk of fights, the couple has smothered their chances for interaction.

Couple 05: It's the house of silence here. Even when it comes to our relationship, communication, conversation, it's shared loneliness that's setting in. She's alone with herself. And me, I'm alone more and more […] It's shared loneliness on both sides. We live side by side. (Caregiver)

These young couples, still in their working lives, are impatiently looking forward to their date of retirement. Over the last few years, they had dreamed up plans requiring time, autonomy, and doing everything together. The onset of the disease puts an end to these plans. Some of the caregivers prefer to put off the start of retirement so as not to be confronted with the disease on a daily basis.

Couple 04: We had made plans for retirement, but they were plans we realize are impossible: we were going to travel, get a camper, and we realize that it would have been impossible. (Caregiver)

Couple 06: I could stay home, because I had a planned layoff schedule that I was in and I refused. I got another job that earned me less, but I got the other job because staying home is something I wouldn't know how to do. I still have three years to go and then I'll get my retirement. Afterwards, that's when it's going to be harder. (Caregiver)

There is no couple anymore, it is over

This rupture first shows up in everything that the person with dementia no longer knows, no longer does, and especially no longer is. Six caregivers say they no longer recognize the person with whom they live, and come to the realization that they have lost the spouse with whom they were living. The future being too anxiety-ridden and the present too alienating, talk turns largely toward the past. The caregiving spouses compare life before and after the disease with a feeling of nostalgia.

Couple 06: Before, she was cheerful, she smiled all the time. At my job, everyone liked her because she talked a lot and she smiled. Anything made her smile, she smiled all the time. (Caregiver)

Couple 01: He's a person who was very sure of himself. Now me, no, but him, whenever someone asked him something, he was sure of what he was saying. So it's true that all that has changed. (Caregiver)

The couple relationship was founded on an amorous contract and operated with a certain balance unique to each dyad. Concretely, this equilibrium involved not only a division of tasks, but also roles, taking into account the personalities of the partners and the ability of each one to nurture the other by some actions, attitudes, or more subjectively by what they embodied. This way of functioning no longer works; it is like a wobbly building that frightens those who live in it.

Couple 15: Owing to the disease, I sense that he's fragile, I sense that he's threatened and it makes me feel unsafe. […] having a man next to you makes you more poised. And now I don't sense his presence anymore. He seems more fragile, more vulnerable. (Caregiver)

Couple 02: I wasn't seeing my husband as my husband anymore, this is not the same person anymore. […] There's a side that has fallen apart. I said to myself “Oh no, I can't count on him anymore …”(Caregiver)

The partner who is seen as the pillar is becoming fragile; the partner who is the vulnerable one has to assume a role of consolidation that is beyond him/her. Daily stress, the psychological impact of the impairments for each person, and the breakdown of the couple's foundation, all are reasons mentioned by the dyads to explain the adverse change in their intimacy and the deterioration of their sexuality. Concerns about the disease relegate intimacy in their relationship to a lower priority.

Couple 02: We've lost all intimacy, we've lost all intimacy. At one point, there we were, side by side. (Person with dementia)

Couple 15: It can't foster intimacy within the couple because it makes us both sad, it depresses both of us. I mean, already we're not young anymore, we don't have hormones racing through us, and if on top of that we're concerned, worried, sad, we're not going to be … obviously, how could we? (Caregiver)

The dyad is no longer seen as a husband/wife entity. Three participants describe a relationship of caregiver-to-person with dementia. The whole series of upheavals leads the two partners to feel that the “couple contract” has been broken. It is not so much that the partners had committed to each other “for better or for worse” and that they now seem to be overwhelmed by the “worse”; it is more that they do not recognize each other and no longer invest themselves in the person that their spouse has become.

Couple 04: From time to time, he mistakes me for his mom, so […] couple. I wouldn't say it's over but I do everything by myself […] I'm often the only one talking and so it's everything all alone. Now there's no more … I mean, it's affection. There's nothing left, it's over. (Caregiver)

Discussion

This study dealt with how young couples cope with early-onset Alzheimer's disease. It falls in line with work conducted on the spouses of young persons with dementia (van Vliet, de Vugt, Bakke, Koopmans, & Verhey, 2010). Our original contribution here is that we used an IPA method to collect and study dyadic data. Our goals were threefold: explore each partner's experiences regarding the onset of the disease and the meaning each one gave to those experiences, determine how the disease affected the couple relationship, and identify the adjustment and interaction modes of the dyad. Seven axes related to the dyad’s interaction modes emerged. The couple’s interactions were characterized by emotional avoidance and control over symptoms that gradually led to deterioration of marital interactions and the components of marital dissolution.

The first analysis informed us about an important result of: a gradual slipping from protective behaviors to behaviors demonstrating more rigid control over the spouses with dementia. First, the strategies were aimed at protecting the persons with dementia by preventing them from being confronted with the disease (Lockeridge & Simpson, 2012), preserving their dignity (Lockeridge & Simpson, 2012), and avoiding having to think about the future (O'Shaughnessy et al., 2010). Next, these young couples talked about how a mutually-fed escalation had set in between the two partners: the caregiving spouse wants to protect the partner with dementia, who does not accept this help; the caregiver increases the amount of help, thinking that the partner is unaware of the impairment and the danger; the person with dementia, feeling controlled, and treated like a child, defends himself/herself against this, and so on. This spiral causes the couple's interactions to become rigid. The impact of this process on the caregiving spouses, manifested in our interviews by constant signals of distress, has been clearly identified in the literature. Distress leads the caregivers to withdraw socially (Ducharme et al., 2013; Lockeridge & Simpson, 2012) and concentrate on the person with dementia, to the detriment of their own needs (Lockeridge & Simpson, 2012). Our caregiving spouses talked about being overwhelmed by the role of caregiver, and about feeling guilty whenever they think of themselves (O'Shaughnessy et al., 2010). They have the impression that they are not recognized or supported in the caregiver role (Lockeridge & Simpson, 2012), for which they feel unprepared (Ducharme et al., 2013). It is interesting to note that some of the participants with dementia were fully aware of how “costly” these immense efforts were for the caregiving spouse, and made their worrying plain, either verbally or by attempting to hide their deficiencies. For both partners, focusing on the person with dementia is experienced as being the source of an intense feeling of confinement, and the resulting need to get away is seldom satisfied. For the partners with dementia, the fear of getting lost, doing something wrong, or getting themselves into a dangerous situation leads them to withdraw more and more and never go out alone. For the caregiving spouses, opportunities for respite are few and far between and paradoxically, are too closely associated with the disease. Isolation from family and friends results in a reduction of available resources. This attitude of avoidance seems to constitute a major obstacle to drawing benefit from a care plan. Moreover, while the majority of the couples expressed profound distress, some talked of how they had adjusted to the changes and the disease without too much avoidance. These caregiving spouses were flexible, adapting the amount of help given to variations in the symptoms, while striving to preserve the partners' autonomy to the greatest extent possible. They were also more receptive to proposals for help and heartily welcomed anything that could provide them with additional tools. The more harmonious and less deleterious functioning of these couples opened the door to guidance and support.

The second set of results deals with the status of the couple and follows directly from the deteriorated interactions described above. Although some of the young couples, especially those who were “independent” before the disease, described how the disease caused them to move closer together and resulted in a stronger relationship. But for most of the other couples, the outcome was negative. Those very things that brought the couple together no longer exist, arrangements made over the past years or decades of marital life are no longer abided by, and recent modes of interaction have adulterated the relationship. Doubt is cast on the viability of the couple, making it difficult to describe the nature of the current relationship. These results find their counterpart in the literature, where we see a set of disease-provoked changes contributing to a feeling of distance experienced by both partners (O'Shaughnessy et al., 2010). They no longer share activities; there are no exchanges anymore (O'Shaughnessy et al., 2010); they isolate themselves from their families and no longer talk to them about the disease unless the symptoms start to become too invasive (Ducharme et al., 2013). A key experience of the young couples in this study is that of shared loneliness resulting from three phenomena: moving away from each other, in combination with social isolation, and the fact of living together. These couples see their future plans falling apart. The disease is experienced as an unfair impediment and is very often a source of anger. The question of loss is a recurring one. They make comparisons between the present and the past, always with a feeling of nostalgia and frustration, and the future becomes uncertain (Ducharme et al., 2013). Retirement, contemplated together with enjoyment and impatience before the disease, is now regarded with apprehension or even pushed away after the onset of the dementia. Finally, many losses including plans for the future, the partner's cognitive abilities, certain activities, sharing and exchange, personal independence, and social relations, exacerbate the loss of identity anchors, which seems to be the most difficult factor in maintaining the “couple” as an entity. The spouses no longer recognize themselves in their roles within the couple. A relationship of caregiver-to-person with dementia sets in and gradually overrides the husband–wife rapport. The initial contract of the couple has been breached and the other person no longer benefits from the same feelings or even any desire. These couples thus see their sexual relationship change (Lockeridge & Simpson, 2012) and their intimacy put into the background; the other person is no longer involved in the same manner.

Several orientations of the present study are worth discussing. Although our approach has potential advantages, it may also have limited the scope of our results. Our main objective falls in line with recent qualitative research on the experiences of caregiving spouses confronted with Alzheimer's disease, and of spouses of young persons with dementia (Lockeridge & Simpson, 2012) mostly based on the caregivers’ discourse. One of the assets of the present study is that we interviewed both partners together. All of the persons with dementia participated in the interviews, although they talked less than their spouses did. Despite this asymmetry, the interviews allowed us to collect discourse from each individual partner, and also their exchanges, and sometimes conflicts where the interviewer was caught in-between. Nevertheless, the exchanges between the two partners were less frequent, it would be interesting to have more interactions using narrative methods like for example, asking them to recount together the story of their couple. This method will let appear more moments of interactions and co-constructions (Molyneaux et al., 2012). The interviews thus provided a very rich setting for capturing the couple's interactions. On the other hand, the persons with dementia's cognitive abilities and the presence of both partners may have hampered free expression by either one (Molyneaux et al., 2012; Robinson et al., 2005) especially if we consider the importance of protecting the other person in the organization of these couples. If interviewed alone, we can assume that the persons with dementia might have felt freer to verbalize; and the caregiving spouses may have been more direct about the perceived consequences of the disease on the other's health. Conversely, we noted that some of the caregiving spouses talked in a pejorative way that may have been deliberately aimed at making the person with dementia feel ill-at-ease (for lack of a better way to demonstrate the magnitude of the deficiencies to the interviewer), and at justifying the need for the controlling safeguards put in place (Robinson et al., 2005). While managing this type of situation is touchy, such situations are testimony to the merits of dyadic approaches to this issue. Other studies on couples facing disease have chosen to conduct separate interviews, compare them, and then analyze any disparities (Clare, 2002). In fact, a combination of the two methods might be the best approach in future research.

This study deals specifically with the dyadic interaction and modus operandi of couples one of whose members is such a person with dementia. The framework of the interviews was intentionally kept broad in order to approach all relevant phenomena. Upon reading the results, it became clear that certain themes could have been developed further. For example, topics like stopping versus continuing to work, one's relationship to the children, and the genetic implications of the disease were in fact addressed but could have been treated in a more systematic fashion. For the couple, it also would seem important in the future to look more deeply into the issue of intimacy and sexuality (Harris, 2009). It also became apparent during the interviews that this was a delicate question that the couples and the interviewers alike had trouble addressing. The interviewers, who were trained in the field of dementia but not in the psychology of the couple, did not always find the right words to make it easier for participants to talk about this. It would therefore be interesting to conduct an additional study with interviewers who are better equipped to address this question, and with a more explicit interview structure.

Among the results, one of the most motivating is the twofold control process implemented by the caregiving spouses: control over their own emotions and control over the behavior of the person with dementia. In our analyses, this phenomenon appeared to be at the heart of the difficulties mentioned by the couples. To our knowledge, there are no studies in the literature that have attempted to quantify or measure this phenomenon. The instruments traditionally used are ones where the caregivers assess their own state: the Burden Interview (Zarit, Reever, & Bach-Peterson, 1980) evaluates the physical and affective load carried by the caregiver; the CRA (Given et al., 1992) evaluates the positive and negative consequences of the caregiving situation. It would be useful in the future, then, to develop a tool for assessing the attitudes and control behaviors that account for the interactions between the person with dementia and the caregiver.

Conclusion

This article provides insight into the preferred adjustment modes and their advantages and disadvantages, so that the caregiving spouses can discover the limits of what they can do and use this discovery as a springboard for expanding their repertory. The caregiving spouses can then appraise the control system put in place and determine its real function and consequences. They can detect any excess focus on the partner's impairments and the risk of losing this loved one. The results regarding the dissolution of the couple fall clearly in line with the preceding ones. It involves restoring dialogue as much as possible, and going back to sharing and the desire to share, which will improve each spouse's ability to take the wishes of the other into account. This axis also prompts the spouses to accept the other person's behaviors and open up to the outside world in order to escape the state of isolation. Reflection upon the nature of the couple and the continuity of their relationship is at the core of this axis. Support and guidance of this kind should draw upon programs that have proven effective at enhancing skills such as self-efficacy (Ducharme et al., 2009), and also upon care plans centered on the couple. Whitlatch, Judge, Zarit, and Femia (2006) underlined the importance of proposing couple-based programs as early as possible after the diagnosis. Early interventions with a dyadic approach are aimed at developing communication between the two partners, informing them about the disease and available support services, and helping the couple get through the emotional upheavals generated by the diagnosis. The support and guidance based on the notion of acceptance (McCurry, 2006) along the first axis, and couple-based approaches (Bodenmann, 1997) along the second should enable the development of a psychological support system suited to the needs identified in the present study.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was funded by the Fond de Recherche du Québec-Santé (Québec), the Canadian Institutes of Health Research (Canada) and the Agence Nationale de Recherche (France) under Grant ANR-10-MALZ-0102-01. This work has been developed and supported through the LabEx (excellence laboratory, program investment for the future) DISTALZ (Development of Innovative Strategies for a Transdisciplinary approach to Alzheimer disease) and the MESHS (Maison Européenne des Sciences de l'Homme et de la Société, Lille, France).

Emilie Wawrziczny is PhD student at the University of Lille 3, laboratory URECA and clinical psychologist at the Roubaix Hospital. Her research work is oriented towards couples' experiences with Alzheimer disease and needs and difficulties of the caregivers of younger dementia persons.

Pascal Antoine, PhD is professor of psychopathology and clinical health psychology. His current work focuses on dyadic perceptions and subjective experience of people living with chronic and neurodegenerative disease.

Francine Ducharme is a professor at the Faculty of Nursing of the Université de Montréal and a researcher at the Research Centre of the Institut universitaire de gériatrie de Montréal. She is holder of the Desjardins Research Chair in Nursing Care for Seniors and their Families for the last 25 years, her research interests include determinants of quality of life of family caregivers and evaluation of psychoeducational interventions and services for family caregivers of vulnerable elderly persons.

Marie-Jeanne Kergoat, MD is a geriatrician, Professor at the faculty of Medicine at Université de Montréal. She is Director of the Memory Clinic and Head of the Department of Specialized Medicine at Institut universitaire de gériatrie de Montréal. Her research work is oriented towards interventions to improve quality of care and organization of services for vulnerable older adults.

Florence Pasquier, MD, PhD in Cognitive Psychology, is professor of Neurology, head of the Memory Research and Resources Clinic at the University Hospital of Lille, France, which is also the French Reference Centre for Young Onset Dementia. She is involved in clinical research on cognitive and behavioral disorders in Alzheimer’s disease and related disorders. She uses a multidisciplinary approach thanks to clinical and basic research collaborations in neurology, neuropsychology, behavior, biology, and brain imaging.

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