The Unique Experience of Spouses in Early-Onset Dementia

Abstract

To date, few studies have examined the experience of spouse caregivers living with a person with early-onset dementia. Moreover, few support resources are offered to these family caregivers and fewer are still tailored to their unique trajectory. The aim of this qualitative study was to document the lived experience of spouse caregivers of young patients in order to inform the development of professional support tailored to their reality. A sample of 12 spouses of persons diagnosed with dementia before the age of 65 participated in semistructured interviews. Six themes emerged from their caregiver trajectories, namely, difficulty managing behavioral and psychological symptoms, long quest for diagnosis, nondisclosure to others and denial of diagnosis, grief for loss of spouse and midlife projects, difficulty juggling unexpected role and daily life responsibilities, and difficulty planning for future. Results open up innovative avenues for the development of interventions geared to facilitating role transition for these spouse caregivers.

Introduction

Numerous studies have examined the difficulties inherent to the role of family caregiver of an older person with dementia. Perceived stress and burden, chronic fatigue, lowered immune system, psychological distress, psychotropic drug use, depression, and even mortality have been amply documented in the literature, ^1–4 which has helped foster the development of intervention programs tailored to the specific needs of these caregivers. ⁵

However, much less is known about the situation of family caregivers of persons with early-onset dementia prior to age ^6,7 65 and, as pointed out recently by Lockeridge and Simpson, ⁸ a major gap remains in our understanding of the lived experience of younger caregivers. Given that dementia continues to be closely associated with aging, studies of early-onset dementias remain relatively scarce, and those investigating the experience of family caregivers of persons with such dementias, primarily their spouses, are even rarer. ⁹ Yet, advances in our knowledge of dementia and in tools for diagnosing the disease have allowed identifying many more cases of dementia in younger people. This has raised questions regarding their clinical management and the need to undertake research on the experience of their family caregivers.

Dementia in younger people can take on various clinical profiles: Alzheimer’s disease, frontotemporal lobe degeneration, focal atrophy, subcortical vascular dementia, and Lewy body dementia. What differentiates early-onset forms of the disease from late-onset forms are a broader spectrum of expression, pervasiveness of certain cognitive symptoms, severity of neuropsychiatric signs, and changes in character and behavior. ¹⁰ Regarding Alzheimer’s disease, the most common variety found at a younger age (followed by frontotemporal dementia), early-onset forms are characterized at the neuropsychological level primarily by severe praxis and executive and language impairment rather than memory loss. ¹¹

In short, younger persons with dementia can be distinguished from older ones on numerous counts. However, owing to laymen’s representations of the disease, younger patients and their marital partners seldom consider the possibility of dementia. This, of course, contributes to lengthen the delay in seeking medical consultation. Moreover, early-onset dementias remain a subject little known even to health care providers. The signs and symptoms observed are often attributed to a depressive state, personality disorders, chronic stress, professional burnout, mental illness, and even changes related to menopause or a midlife crisis. ¹²

Once the diagnosis has been established, the advent of dementia is always associated with psychological upheaval in the persons affected and their families. ⁷ The spouse caregivers of these young persons, whether male or female, are most often in their 50s ¹³ and still have children at home. Despite being essentially the same age as children of caregivers of an elderly parent with dementia, some differences in the lived experience of spouse caregivers merit consideration. ¹⁴ In particular, the gradual loss of autonomy and the inability to accomplish conjugal and family daily tasks of the life partners of spouse caregivers has numerous repercussions on the socioprofessional, financial, and psychological dimensions of family life. ¹⁵ Moreover, the lack of preparation for the caregiver role at a time when marital partners are confronted with a disease that a priori is highly unlikely at an early age could be a stressor. ⁶ The transition to the caregiver role is particularly difficult as it requires marital partners to operate an identity change. A study by Savundranayagam and Montgomery showed that caregivers experience distress when they perceive they are going beyond and above their expectations of the relationship identity. ¹⁶ The psychological distress of spouse caregivers might also be explained by the longer delay to obtain a diagnosis, the breadth and the severity of the affected person’s psychobehavioral problems, ¹⁰ and the absence of professional resources tailored to the specific needs of these younger couples. ^17,18

In sum, selected studies have reported a higher level of stress and burden experienced by spouse caregivers of persons affected by dementia at an earlier age than by the family caregivers of persons affected at a later age. ^6,14,19 As a result, the situation of these caregivers is beginning to be taken into account and to be considered a genuine public health concern. However, before offering services or interventions tailored to their reality, it is imperative to identify the different facets of their daily life experience. ²⁰

To date, although a few studies, ⁹ including a single-case study, ²¹ have allowed documenting certain aspects of this reality, the empirical evidence remains limited (a prospective cohort study of the course of early-onset dementia and the needs of these caregivers is underway ²² ). Moreover, most of the existing works have focused on the perceptions of health care providers rather than on those of the spouse caregivers living with persons with dementia. ²³ As expressed by Bakker et al, ²¹ research is needed to gain a more in-depth understanding of this experience in order to develop services tailored to the needs of these spouse caregivers. Against this background, we undertook a project to document the lived experience of spouse caregivers of younger patients from the viewpoint of their trajectory with the disease in the aim of providing directions for the development of professional resources better suited to their reality.

Method

Design

In light of the embryonic state of the psychosocial literature on spouse caregivers of younger persons with dementia, a qualitative study informed by the principles of phenomenology was undertaken to explore their experience in depth.

Setting, Sample, and Recruitment

Spouses of family caregivers of persons diagnosed with early-onset Alzheimer’s disease or a related disorder were recruited via the memory clinics of the center for excellence in cognitive health of the integrated university health network of the Université de Montréal, which brings together various care centers (hospitals, health and social community service centers and one university teaching institute). The geriatricians, neurologists, and psychiatrists in these clinics make dementia diagnoses on a regular basis.

Participants had to meet the following selection criteria: spouse of a person diagnosed with Alzheimer’s or a related disease before age 65 and self-defined primary caregiver of the person. The participants were recruited sequentially as they met the selection criteria. In accordance with standard practice for qualitative studies, data collection and data analysis were performed simultaneously, and the number of participants was determined by the achievement of data saturation regarding life experience, that is, when the themes to emerge from the participants’ discourse became redundant. ^24,25 Saturation was reached upon completion of the 12th individual interview.

Data Collection Tool

Semistructured interviews were conducted with the spouse caregivers based on the interviews developed by Clare et al ²⁶ in a study of awareness of the disease in persons at the moderate or severe stage of dementia. The semistructured interview focused on the couple’s trajectory since the appearance of the disease (ie, onset of first symptoms) and covered different themes related to their experience within this trajectory, including first symptoms, quest for diagnosis, main difficulties encountered, and evolution of relations within dyad and family. Broad, open-ended questions afforded room for introspection and elaboration, for example: “Can you tell me how things went when you first noted changes in your partner’s behaviour? Can you explain what happened from the moment you received the diagnosis? As far as your family and others around you go, do you have the impression that things have changed?”

Interviews lasted 90 minutes on average and were carried out by interviewers with expertise in mental health and trained in conducting qualitative interviews. The interviewers followed the guidelines defined in the interview guide but above all sought to penetrate the world of the participants who were considered the experts on their own reality.

Data Collection Procedure

The project was approved by the ethics review boards of the various recruitment sites. A health care provider was mandated in each clinical facility to contact potential participants in order to obtain their consent to forward their contact information to the project investigators. Thereafter, the project coordinator contacted the spouses to explain the purpose of the study, solicit their participation, and verify the inclusion criteria. The interviews were conducted either in the cognition clinic or at home at the participant’s discretion and convenience. The semistructured interviews were carried out after participants had been given an information leaflet on the study and had signed a consent form. The interviews were audiotaped.

Data Analysis

As mentioned previously, data collection and qualitative analysis were carried out simultaneously. The content of each taped interview was transcribed verbatim, and the qualitative data analyses were carried out by 2 members of the research team with expertise in qualitative data analysis. These researchers read the transcripts of the first 5 interviews independent of one another. They then developed a coding scheme by marking the statements deemed relevant to the lived experience of caregivers according to the method developed by Miles and Huberman ²⁵ using the QDA Minor 4.0 software, a qualitative data analysis software developed by Provalis Research in 2011. More specifically, this consisted in identifying and coding units of meaning, taking into account the general concepts to emerge from the responses to the questions from the interview guide; for instance, “difficulty managing behavioral and psychological symptoms” was identified as a general concept to emerge from the first 5 individual interviews. This initial coding scheme was subjected to interrater validation by consensus and was later used in the thematic content analysis of the data collected thereafter. This interrater validation of the coding process achieved 98% agreement.

Results

The spouse caregivers (8 women and 4 men) were 55 years old (standard deviation [SD] = 6.9) and had 16 years of schooling (SD = 3.6), on average. The male caregivers were on average older (X = 60 years) than their female counterparts (X = 52 years). The cared-for spouse’s diagnosis had been disclosed on average 4 years earlier. Alzheimer-type dementia was the diagnosis in 9 of the 12 cases. The other 3 persons were diagnosed with Pick’s disease and mixed dementia (one case of Alzheimer’s disease and Lewy body dementia, and one of Alzheimer’s disease and vascular dementia). The spouses had been caring for their partners for 6.5 years (SD = 1.8) and offered, on average, 102 hours a week of support, help, and care (SD = 57.7); one-third of the participants had children at home. Most (58.3%) received services, including for housework, personal and nursing care, and respite. Given the young age of the spouses, respite allowed primarily to continue working. It was offered at home, in the facilities of the Alzheimer Society, or in a day care center. Most of these services were offered free of charge by the Quebec health and social services network. The others were mainly house-cleaning services offered for a fee by the private sector.

Data analyses showed that the spouses’ experience across their trajectory revolved essentially around 6 recurring themes: difficulty managing behavioral and psychological symptoms of life partner; long quest for diagnosis; nondisclosure to others and denial of diagnosis; grief for loss of spouse, married life, and midlife projects; difficulty juggling unexpected role and daily life responsibilities; and difficulty planning for future. No differences were noted between the male and the female spouse caregivers in terms of these emergent themes.

Results are presented subsequently by theme, supported by relevant excerpts from the transcripts.

Difficulty Managing Behavioral and Psychological Symptoms

Very often, strange behaviors were the first signs to raise suspicions of the disease. As these behaviors were more frequent and intense than those that characterize late-onset dementia, spouses sought alternative explanations for these unusual situations. Fatigue, stress, overwork, professional burnout, and depression were evoked in sequence to justify aggressiveness, temporary confusion, and loss of familiar reference points. Unlike with persons affected by the disease at an advanced age, memory loss was not what alerted the spouses. The alarm was sounded instead by behavioral problems and changes in personality:

What happened was … I came home one night … it was winter … and the snow in front of the house had been cleared … I knew my sons were at school so it couldn’t have been them … so I went into the house and my wife was there sitting on a chair and I asked her, “Did you shovel the snow?” She wasn’t able to answer me … she began screaming … (Interview 01—male, age 56, caring for spouse with Pick’s disease)

This caregiver’s experience was particularly difficult on account of his spouse’s uninhibited and aggressive behavior, which is common to Pick’s disease. This difficulty in dealing with problem behaviors was noted in most of the caregivers in our study, regardless of the diagnosis of the cared-for person. Another caregiver described this difficulty in these terms:

What upsets me a lot is his aggressiveness … I’d never been confronted with this sort of thing in my life. I have to say it’s quite something because he’s aggressive and it’s totally out of nowhere. (Interview 02—female, age 56, caring for spouse with Alzheimer’s disease)

The cared-for person’s inability to pursue work-related activities was what drew the most attention initially. In the early stages, frequent mistakes on the job prompted colleagues and superiors to offer leave, rest or a change of duties, laying the blame on burnout without considering the possibility of dementia even remotely:

Even his employer said: Look, take a week off, see a doctor, something’s not right. He was working at the time, it was his last job and, suddenly, it must have been the stress, he used to tell me that he was under a lot of stress at work and then … they demoted him a couple of times and, in the end, they let him go … he wasn’t delivering the goods … (Interview 04—female, age 54, caring for spouse with Alzheimer’s disease)

He was an electrical engineer … What always struck me was that he would manage to lose his job … He held high-standing positions and then all of a sudden: oops! … (Interview 03—female, age 56, caring for spouse with Alzheimer’s disease)

Long Quest for Diagnosis

After a few years of searching for alternative explanations from a variety of health care professionals, the time came when medical consultation finally led to the hypothesis of a cognitive impairment associated with Alzheimer-type dementia or a related disease. The circumstances surrounding this disclosure were particularly difficult. The announcement of this diagnosis at a young age marked a shocking transition period for the persons affected and their spouses. The diagnosis was often a source of uncertainty but also often one of the relief, as it explained the peculiar behaviors that had been exhibited for years. To diminish the sense of anxiety and helplessness that accompanied this uncertainty, caregivers sought other sources of information in order to obtain the explanations that they struggled to find within the health care system. Most of the caregivers thus searched the Internet before and after the diagnosis and several point out that the diagnosis confirmed what they had been able to find out on their own from the Web. Despite the fact that some cognition clinics referred caregivers to the Alzheimer Society in their region for support, the Internet remained the main source of information for the spouses. Generally speaking, health professionals were not indicated as a major source of information at the time of diagnosis. Questions that preoccupied caregivers regarding medication, driving, and hereditary aspects of the disease were addressed instead at subsequent visits in the course of medical treatment.

In short, marital partners apprehended the harsh reality that awaited them but also sought to understand the nature of the disease, its prognosis, its likely course, its possible treatments, its duration, the care to expect, and the changes to make to one’s home and family life.

For me, Pick’s disease didn’t mean much, a little Pick’s couldn’t be that serious … I mean, the neurologist said it wasn’t Alzheimer’s … so we walked away with a sigh of relief, but then when you start searching the internet … (Interview 01—male, age 56, caring for spouse with Pick’s disease)

He announced it in such a way … he didn’t come right out and say it was Alzheimer’s disease. I had to ask: “Are you saying that it’s Alzheimer’s disease?” He said, “Yes”. It confirmed what I suspected … we then looked for information on the internet and it became very clear that was what it was. (Interview 08—female, age 55, caring for spouse with Alzheimer’s disease)

Nondisclosure to Others and Denial of Diagnosis

The diagnosis of dementia, uncommon at such an early age, was not shared with others, not even one’s children. The taboos and stigma associated with the disease prompted the spouses to turn the disclosure into “a matter that concerned only the 2 of us.” However, given the growing severity of the behaviors observable in the community, pressure from third parties pushed the spouse caregivers to furnish an explanation to their children, family, and friends. This situation, unspoken and kept hidden for a long time, contributed to isolate the spouses. In addition, when children, family, and friends were finally informed of the diagnosis following the onset of symptoms impossible to mask, the spouses felt a sense of embarrassment and the desire to avoid social situations:

My children … it broke my heart … what broke my heart most was for my children to see their father like that. How was I going to tell them the truth … their father has … what? (Interview 03—female, age 56, caring for spouse with Alzheimer’s disease)

Nicholas (6 years old) said to me: “It’s weird, I talk to dad but it’s like he isn’t there” … as for me, I stopped letting my spouse go biking with Nicholas a long time ago. I said to him: “Your dad has a disease and he can’t do as much as he used to with his brain; he can no longer register everything: red lights, green lights, other cars, pedestrians …”

We didn’t tell a whole lot of people at first … Now, I tend to come out with it more because it just shows more … (Interview 05—female, age 46, caring for spouse with mixed Alzheimer’s disease and Lewy-body dementia)

The isolation of the couple sprang in part from a reluctance to seek help from a social network deemed unable to comprehend the reality of the disease at such a young age as well as from the fear of stigma and bias:

… his brothers, like his family and friends … more or less the same reaction: “You should’ve persuaded him to take some time off, everyone could see that he was on the edge of a burnout.”

My daughter said to me that, at 55, her friends’ fathers were at the peak of their careers … (Interview 06—female, age 58, caring for spouse with Alzheimer’s disease)

Grief for Loss of Spouse, Married Life, and Midlife Projects

Diagnostic disclosure often marked the moment when grief for loss of spouse, of one’s married life, and of life projects struck the consciousness of the caregivers as though a verdict had been officially laid down:

What it means deep down is that he’s no longer your spouse and you become like his mother or his guardian! (Interview 09—female age 58, caring for spouse with Alzheimer’s disease)

I’m grieving the loss of my husband, of my lover … I know that he’ll grow more and more dependent. I’m also grieving the loss of my work. (Interview 05—female, age 46, caring for spouse with mixed Alzheimer’s disease and Lewy-body dementia)

In sum, caregivers realized that they needed to grieve the loss of numerous things, the relationship with their spouse that existed prior to the disease, their spouse role in exchange for their caregiver role, and a “normal” life. Complicity and intellectual and reciprocal exchanges disappeared gradually.

Acquiring Caregiver Role Prematurely and Juggling It With Others

Not only did this grieving cause suffering, but the caregiver role occupied more and more space in the life of the spouses who had not been prepared for it. This affected the spouses’ other roles and responsibilities of daily life, that is, those of parent, child of an aging parent, and worker:

I don’t feel at all like an expert, just overwhelmed. I don’t feel young any more, I feel like an old lady. Being a family caregiver isn’t where I was at in my life … I’m the mother of a young child. (Interview 05—female, age 46, caring for spouse with mixed Alzheimer’s disease and Lewy-body dementia)

My parents are getting old too … my mother will be turning 90 … They’re losing their autonomy and I have to look after them as well. (Interview 10—female, age 55, caring for spouse with mixed Alzheimer’s disease and vascular dementia)

I have to earn a living in all of this as well, I have to work and if I’m working I can’t be with him full-time … So at 46, here I am on welfare, but all I’m doing is worth a great deal … (Interview 05—female, age 46, caring for spouse with mixed Alzheimer’s disease and Lewy-body dementia)

Difficulty Planning for Future

Still young, the spouse caregivers had many years ahead of them and expected an uncertain future while experiencing feelings of helplessness. The following statements testified to this uncertainty:

Having young children, very young children in our case, it complicates matters a great deal. If I fall ill, my child is suddenly an orphan. (Interview 05—female, age 46, caring for spouse with mixed Alzheimer’s disease and Lewy-body dementia)

Everything is up in the air, there are still so many things that we could have worked on … but now, there’s no use talking about any of that. (Interview 06—female, age 58, caring for spouse with Alzheimer’s disease)

This really changes my life plans and my momentum. It goes against the flow … I now have to take care of someone. This isn’t what we had in mind for our retirement. (Interview 05—female, age 46, caring for spouse with mixed Alzheimer’s disease and Lewy-body dementia)

There were few resources available to help the spousal dyads deal with all these difficulties undermining daily life. Limited availability and accessibility and lack of flexibility and continuity were the faults cited by the spouses in reference to the home care, psychological support, and respite services that they needed:

When I was working full-time, the social worker offered me kitchen assistance because someone does have to do the cooking, I’m working full-time and there’s everything else to do at the same time. Well, I accepted the offer … but there were different people coming in every week and, so, it sometimes meant more work for me than if I did the cooking myself.

At the beginning of the year, I told the social worker that I would like to see a psychologist. He said, “Listen, I have to put it past my superiors first”. Well, when he got back to me it was “no”! All he did was give me a list of people who practised psychology at a discount.

I really tried to find someplace where I could be alone … but we have a child. In my case, if I ask this service to come here, well I have to get my son out of the house, which means that this service is for someone with no children … or for an elderly couple. (Interview 05—female, age 46, caring for spouse with mixed Alzheimer’s disease and Lewy-body dementia).

In sum, the 6 themes identified attested to the spouse caregivers’ trajectory, one littered with pitfalls and uncertainty related to the strangeness of this diagnosis formulated at such an early age and to its repercussions on daily life and midlife projects. Both the male and the female spouses of a person with the disease at a young age were able to talk about their situation and their emotions in relation to their lived experience. The results showed that caregivers, whether male or female, who were in the labor market and who had children at home described a particularly difficult experience in connection with their spouse’s disease.

Discussion and Implications for Professional Practice

Numerous authors have underscored the urgency in developing clinical interventions to sustain caregivers of persons with early-onset dementia, beginning with studying their specific needs and characteristics. ^7,21 Our project followed this recommendation and allowed gaining a better understanding of how spouse caregivers experience the challenges of their role.

Many aspects of the experience of spouse caregivers of younger persons are similar to those of the experience of caregivers of older persons. However, some particularities color the discourse of the former group and, as mentioned in the review by van Vliet and colleagues, ¹⁵ unique characteristics emerge from their experiences. Our results underline that the quest for a diagnosis or for the cause of the changes perceived and experienced, management of the spouse’s “problem” behaviors, preparation for the caregiver role, and adjustments to marital and family life are elements that have a heavy impact on the spouse caregivers’ trajectory.

More specifically, the mediatization of the disease, which is often linked to negative images of aging, influences the information conveyed to younger couples at the time of diagnostic disclosure. As highlighted in the study by Phillips et al, euphemisms are often used in talking about dementia at the time of disclosure in order to mitigate the impact of the news. ²⁷ The stigma associated with dementia has an influence on perceptions as well. Indeed, couples often fear the reactions and judgments of others, especially rejection and incomprehension. This is why, once a diagnosis is obtained, they tend to feel helplessness and to grow socially isolated, all the more so in that there are no resources available designed specifically for younger couples.

The behaviors of the persons affected, which are often more perturbing at a younger age, are a major source of difficulty for the marital partners. According to a quantitative study carried out by Arai et al, ⁶ one of the significant differences between the difficulties of caregivers of persons with late-onset dementia and those of caregivers of persons with early-onset dementia lies in the area of problem behaviors.

Spouses also clearly expressed their concerns regarding the new role that now occupied most of their time. These caregivers were at times both the parent of young children and the child of vulnerable elderly parents. The disease thus disrupted the entire intergenerational dynamic. ¹² In this connection, one of the major stressors for these spouses concerned the change in marital role. As rightly mentioned by Montgomery and Kosloski in their caregiver identity theory, ²⁸ the spouse caregivers’ stress derives in large part from the difficult process of identity change that is making the transition from the role of life partner to that of everyday caregiver. According to the authors of this theory, the caregiver role is not adjunctive or complementary to that of spouse but rather emerges from it and from the spousal relationship that existed prior to the advent of the disease. The person’s identity changes with the ensuing loss of autonomy and accumulation of tasks and thus covers the aspects of both the roles, namely, that of spouse and that of caregiver. However, the caregiver role will grow in importance and will become more and more incongruent with identity standards for the spousal role internalized over time. The impact of such role discrepancies on spouse caregiver burden, that is, the extent to which the standards of the relationship identity are inconsistent with the behavior of spouse caregivers has been documented in the study by Savundranayagam and Montgomery. ¹⁶

The disease upsets other aspects of marital and family life as well. In particular, as the disease undermines the household’s financial security, marital partners of younger patients must manage not only the costs inherent to the disease and to services received but also the full or partial loss of household income. Indeed, early-onset dementias affect persons who are active in the labor force and whose employment earnings represent all or part of their family’s financial resources. Their spouses, who are still young, are often in the labor market at the time of diagnostic disclosure and are deeply concerned by the fact of having to give up their worker role in order to assume a caregiver role full time. The consequences of this financial loss extend well beyond the purely economic dimension to include a lowered sense of self-esteem. ²⁹

Clearly, spouse caregivers of persons with early-onset dementia seem to differ from child caregivers of an elderly parent on various facets of their life experience. Although it is important to recognize the variability of life experiences, the 2 groups seem to attribute a different weight to themes regarding significant changes in roles and in professional activities and to the impact of the disease on the family, especially young children.

Implications for Practice With Spouse Caregivers

As suggested in the literature, ³⁰ some of the support interventions required by family caregivers of persons with dementia are generic. These include support at the time of diagnostic disclosure, help managing changes, learning to assume the caregiver role, and juggling other responsibilities. The results of our study underscore that other measures of support would be more specific for spouse caregivers of persons with early-onset dementia, particularly with regard to the role identity and to the change in intergenerational ties owing to the frequent presence of children still at home. However, support offered to this specific subgroup of spouse caregivers is often ill suited or unrelated to their personal needs.

In light of the fact that newly diagnosed young persons and their spouses tend to fear being stigmatized, a broader systemic approach in which all family members are allowed to share their certainties, questions, values, and beliefs regarding the disease might help demystify the issue and prevent isolation among these spouse caregivers. In this context, caregivers must acquire the skills required to mobilize the support of family and friends. They must also acquire the skills to seek professional support tailored to their specific needs. Resorting to family support and services takes time, energy, and resourcefulness, which are all things that caregivers often have in short supply. Consequently, it is essential to empower them as early as possible in their trajectory so that they can surround themselves with appropriate formal and informal support resources throughout their caregiver career.

An expert case manager could be assigned to each caregiver–care recipient dyad, following diagnostic disclosure in order to assess their specific support needs collaboratively. These needs are all too often determined solely by health professionals without taking account of the viewpoint of the dyad, which is the “expert” of its own experience and needs. Such a partnership approach would foster a sense of empowerment and self-efficacy in family caregivers. ³¹

A quality professional intervention program would also have to target empowerment to redefine roles and strategies for coping in order to help caregivers adjust to this major life transition. ^9–12 In this regard, Montgomery and Kosloski proposed a number of possible interesting interventions in connection with their role identity theory. These authors suggested, in particular, diminishing identity incongruence by working on behaviors and perceptions regarding the caregiver role that will gradually supplant the spousal role and seeking to change the standards and rules associated with the new identity. ³²

The difficulty that spouse caregivers had understanding and accepting the care recipient’s loss of reference points and inhibitions signals another need for support. For caregivers, talking and sharing with their life partner used to be the most natural of occurrences. The change in this regard owing to the faster evolution of the disease at a younger age is distressing. Knowledge and skills regarding the best communication strategies to use within the couple are necessary in order to instil a sense of self-efficacy in the dyads. This seems to be particularly important in the case of dementias accompanied by major behavioral changes as is the case with Pick’s disease.

In light of the considerable marital difficulties and numerous losses experienced by these caregivers, a dyadic approach such as the one used with couples affected by other types of chronic health problems ^33,34 would be fitting. Such an intervention could serve to recognize changes that occur over time in both the marital and the caregiver–care recipient relationships as well as changes in the dyad’s support needs. To date, intervention programs for family members of persons with dementia that have been evaluated empirically have been aimed mainly at the primary family caregiver of elderly persons and have employed an individual intervention approach. ³⁵ Although these efforts have helped develop innovative interventions that allow taking into consideration the needs of spouse caregivers and their life circumstances, they have not allowed explicitly taking account of the longitudinal life course perspective of family caregiving and the family dynamic. ³⁶

A more systemic, integrated, and interdisciplinary approach ¹³ would certainly be more complex, but it seems necessary in order to offer interventions tailored to needs. Clearly, such an approach would necessarily have to respect the will and the time that couples are prepared to devote to this type of intervention and would have to be offered using a realistic step-by-step approach in order to avoid overburdening them even more.

Our study opens up avenues for developing and evaluating professional interventions aimed at supporting the growing number of couples having to deal with dementia at an early age. This is a genuine public health concern with repercussions on the entire family. What is more, spouse caregivers have unique needs that are presently not addressed in existing support programs intended primarily for family caregivers of an elderly relative. Consequently, future research on the experience of spouse caregivers and their partners with early-onset dementia should consider not only the spousal subsystem but also the interactions within the family system as a whole. ³⁷