serious mental health problem

The term “serious mental health problem” acknowledges situations where the difficulties experienced by the care recipient have significant and lasting impacts on their daily life, and consequently on the lives of their caregivers.

Unlike “mental illness,” which tends to put the focus on diagnosis, the term “mental health problem” emphasizes lived experience and its practical consequences — particularly for caregiver support, responsibilities and adaptation — thereby better reflecting the diversity of individual life trajectories (102).

WHO ARE THEY?

Mental health problems manifest as difficulties that affect an individual’s psychological and emotional well-being and can present across multiple domains:

• Cognitive (e.g., disorganized thinking, memory problems, difficulty concentrating)
• Affective (e.g., severe anxiety, emotional instability, turning inward)
• Behavioural (e.g., restlessness, impulsivity, social withdrawal)
• Functional (e.g., difficulty holding down a job, maintaining a routine or managing daily tasks)

Across these domains, the continuum ranges from mild to severe (4, 7, 8).

Mental health caregivers are spouses, parents, children, friends, extended family members or any other significant person who provides support to a loved one living with a mental health problem, whether or not a formal diagnosis has been made.

The caregiving trajectory is rarely linear. Instead, it follows a cyclical pattern of recurring and overlapping periods of crisis, support-seeking, recovery and care. This dynamic requires caregivers to remain flexible, accept the unpredictable and continually adapt to changing circumstances, reshaping the caregiver–care recipient relationship over time (85).

GenDER

Women constitute the majority of caregivers overall, including in the area of mental health, where they often assume greater responsibilities within the family and social circles (147, 149). This predominance is largely explained by traditional gender roles, which tend to assign domestic and caregiving tasks to women. Women are also subject to high social expectations and may feel compelled to meet them, sometimes at the expense of their own well-being, thereby increasing their risk of becoming overburdened and experiencing chronic stress (93).

In addition, women caregivers are affected by gender-based economic and social inequalities, making them more likely to reduce their working hours or experience a loss of income due to their caregiving responsibilities. This in turn can limit their access to appropriate mental health care for both themselves and the person they support (28).

Male caregivers are likely to experience the role differently, due in particular to gender norms that value stoicism and discourage emotional expression or asking for help (159). Further research is needed to better document the specific needs of male caregivers and the barriers they may encounter.

Age

Age is a major factor in how caregivers experience caregiving. Young people, adults and older adults will experience it differently, depending on their stage of life, priorities and individual coping skills.

When the caregiver is young (under 25), caregiving occurs during a period of significant transition — a time when their experience providing care is shaped by ongoing developments in their education, careers, social life and identity (136). To better understand the specific challenges they face, see the Trajectory of young caregivers.

Adult caregivers are generally better able to understand the implications of mental health problems than younger caregivers and more likely to seek support (12, 97, 99).

Older adult caregivers face specific constraints related to aging. For example, their ability to provide consistent support or intervene effectively during crises may be affected by their own health. Advanced age can also bring greater concern for the future, as caregivers may worry about who will take over in their absence and how to ensure continuity of care for their loved one (96). Despite these challenges, the life experience of older adult caregivers can be a valuable asset, enabling a better understanding of service networks, more effective navigation of the health and social services system, and greater patience and empathy (28).

Stigma and discrimination

Society as a whole holds negative attitudes toward mental health problems (132). Caregivers generally perceive a lack of empathy for people living with mental health conditions, noting a failure to understand their limitations and difficulties (94). In contrast to physical illnesses, which generally elicit compassion, mental health problems frequently provoke blame, distancing and misunderstanding from family, friends, and society at large (14).

People with mental health problems and their caregivers may also encounter structural stigma when accessing health services (76). Some caregivers report having their concerns dismissed by healthcare professionals; others describe being implicitly blamed for their loved one’s condition, contributing to feelings of guilt. Caregivers may also experience stigma by association, whereby the prejudice and discrimination directed toward people with mental health problems also extend to family members and others closely connected to them (76).

Stigma and social prejudice associated with mental health problems represent major barriers for both caregivers and care recipients, leaving many caregivers feeling isolated (94). Negative attitudes from society at large often manifest as discrimination and social exclusion, reducing self-esteem and discouraging help-seeking (37).

Conversely, when caregivers are able to share their experiences with others without fear of judgment, they experience a sense of relief and feel better equipped to manage the situation (37). It is therefore essential to combat stigma and promote a deeper understanding of mental health issues within society.

Socioeconomic situation

Caregivers who must balance employment and caregiving responsibilities often face difficult choices between maintaining their careers and supporting their loved one. Reducing working hours or leaving the workforce altogether to provide care can result in substantial income loss, directly affecting the quality of life of caregivers and their families (47, 110). Women are particularly likely to experience income loss associated with their caregiving responsibilities (28).

These repercussions can be especially severe for caregivers in precarious, part-time or inflexible employment. The resulting financial strain can not only increase their psychological and emotional burden, but also limit their access to specialized private services (50). This is particularly true for caregivers supporting someone with a mental health problem, given the limited availability of public mental health services in Quebec (157).

Minority group membership

Belonging to a minority group shapes the caregiving experience (48, 80).

People from ethnocultural minority group may hold understandings of health, illness and healing that differ from those that predominate within the health and social services system. These differences can lead to misunderstandings, delays in seeking care and a mistrust of services (139, 140).

Language barriers and being part of a racialized group can also make access to services more difficult, in part because of structural barriers to care and experiences of exclusion (57, 135). This is particularly true for Indigenous caregivers, whose collective history of colonization and intergenerational trauma can generate mistrust and fear of discrimination, in a context where existing services may not adequately meet their needs (137).

Caregivers from 2SLGBTQIA+ communities also face specific challenges related to recognition of their role, stigma, and the risk of marginalization in certain family or institutional settings (138).

It is essential that service providers understand how belonging to different minority groups can shape the caregiving experience. By adopting a respectful, inclusive, culturally responsive approach grounded in listening and attentive to each person’s values and beliefs, service providers can help reduce barriers to accessing services while fostering trusting relationships and creating spaces where caregivers’ unique experiences and needs are recognized and addressed. Such an approach can improve the quality of care, reduce feelings of isolation, and strengthen trust between families and the health and social services system (12, 135).

Service organization and access

Services for people living with mental health problems are generally perceived by caregivers as helpful when they are accessible, available and delivered with compassion (143). However, many caregivers also report ongoing dissatisfaction with existing service structures (144).

Systemic barriers create significant hurdles that limit access to care. These include:

• A lack of mental health resources
• Staff turnover and inadequate information-sharing among professionals, both of which are sources of frustration for caregivers:

• The complexity of admission procedures for hospital services (150).
• A lack of clear information about the available services, making it particularly difficult for caregivers to navigate the system (150).
• A shortage of spaces in youth mental health resources, forcing some young people into adult treatment settings — a stressful situation for both the young people and their caregivers:

Some caregivers face additional barriers to service access that are related to financial, geographic, linguistic or cultural factors. This is particularly the case for caregivers who live in remote areas, are experiencing poverty, or belong to an ethnocultural minority group (150). The stigma surrounding mental health problems also discourages people from seeking help and further complicates access to services (151, 152, 153).

Relationship with the care recipient

The relationship between the caregiver and care recipient influences the caregiving trajectory by shaping the tensions, expectations and forms of support that emerge.

When the caregiver is a young person supporting a parent with mental health problems, they may be required to assume significant emotional, organizational or domestic responsibilities — tasks that generally exceed what is typically expected of someone their age or within the context of a parent–child relationship. This role reversal can create tensions, particularly between the parent’s need for support and the young person’s developmental needs (136). To better understand the issues specific to young caregivers supporting a parent with mental health issues, see the Trajectory of young caregivers.

When the caregiver is a parent, caregiving often begins with the first signs of a mental health problem, which can occur during their child’s adolescence or early adulthood (25, 95). For parents, caregiving responsibilities tend to extend over the long term. This sustained involvement can gradually lead to burnout, compounded by the psychological burden of a responsibility perceived as both unconditional and unending (25, 95). The considerable moral pressure that typically accompanies the parental role may also give rise to feelings of guilt or failure.

When the caregiver is a spouse or partner, the shift in the couple’s dynamic presents a different set of challenges. Chief among these is the need for the caregiving spouse to balance the dual role of intimate partner and carer (39). Spousal caregiving affects not only the practical aspects of daily life, but also the couple’s intimacy and overall balance, sometimes at the cost of relationship deterioration, loyalty conflicts and psychological distress (53). This type of caregiving is also associated with a greater financial burden (95).

Beyond the caregiver–care recipient relationship, caregiving also affects family dynamics and the wider social circle. Emerging tensions related to caregiving, recurring conflicts or a negative emotional climate can place strain on the caregiver’s support network (2). Conversely, some families function as a strong support system, facilitating the sharing of responsibilities and more effective care management. 

Understanding the relational dynamics between caregivers, care recipients and their broader circle is essential for adapting support interventions and addressing caregivers’ specific needs.

Durée et intensité du soutien par les PPA

Les PPA qui soutiennent un·e proche vivant avec des problèmes de santé mentale assument souvent une grande diversité de responsabilités, et ce, sur de longues périodes. L’intensité du soutien offert par les PPA dépend des difficultés vécues par la personne accompagnée, de la sévérité des problèmes de santé mentale et de l’accessibilité des ressources (55). 

Les responsabilités de proche aidance peuvent être regroupées en trois types :

• Soutien émotionnel: Centrale en santé mentale, ce type de soutien inclut l’écoute, la présence rassurante, l’appui affectif, la validation des émotions et les encouragements dans les moments de doute, de détresse ou de crise. Il implique souvent des contacts réguliers, par téléphone, messages ou visites, qui permettent de maintenir un lien stable et sécurisant (75).
• Soutien pratique: Ce type de soutien peut inclure l’aide aux activités de la vie quotidienne (ex. : préparation des repas, entretien de la maison, soins personnels, etc.), l’aide financière ponctuelle, la gestion du budget et l’aide dans les démarches telles que la recherche d’un emploi, de logement ou l’organisation des déplacements quotidiens (54, 75).
• Soutien logistique: Ce type de soutien comprend l’ensemble des tâches d’organisation et de coordination liées à la gestion des soins de santé de la personne accompagnée (74). Il comprend la prise de rendez-vous, la planification des déplacements, le renouvellement des ordonnances, le suivi de la médication ainsi que la communication régulière avec les professionnel·le·s de la santé et des services sociaux. Dans certains cas, les PPA endossent un rôle de gestionnaires des informations médicales, en veillant à ce que tou·te·s les intervenant·e·s disposent des renseignements nécessaires aux soins (74, 75). Ce rôle, qui s’avère crucial pour éviter les ruptures de services, assurer la continuité des soins et faciliter l’accès aux ressources existantes, exige des compétences organisationnelles, mais aussi une capacité à comprendre les systèmes de santé et de services sociaux (74, 75). Les PPA se heurtent fréquemment à des obstacles majeurs liés à la confidentialité et à la protection des renseignements personnels, qui limitent leur accès à des informations pourtant indispensables pour coordonner adéquatement les soins de leur proche et le soutenir (78, 117). 

La proche aidance en santé mentale se distingue d’autres formes de proche aidance par la complexité et la nature souvent invisible des besoins de la personne accompagnée. Les responsabilités de proche aidance sont fréquemment sous-estimées et — comme pour les autres formes de proche aidance — perçues comme « naturelles », relevant des liens affectifs ou familiaux, plutôt que comme un rôle exigeant mobilisant temps, énergie et compétences (13). Or, il est estimé qu’environ 30 % des PPA en santé mentale consacrent plus de 10 heures par semaine aux tâches d’accompagnement, et près de 15 % y consacrent plus de 20 heures par semaine (99).

Mental health problem types and severity

Mental health problems can present in various forms. Depending on their nature, severity and progression, they can significantly affect an individual’s autonomy, as well as their ability to maintain stable social relationships, make informed decisions, or manage their overall health (8). Diagnoses frequently associated with a need for sustained support include psychotic, bipolar, anxiety, severe depressive, and personality disorders (8, 12, 102).

The nature of a mental health problem also shapes how caregivers organize and provide their support, whether or not a formal diagnosis is present (100, 154).

For example:

• Schizophrenia may require constant monitoring for signs of relapse, management of antipsychotic medication side effects, and close coordination with psychiatric care teams (39).
• Bipolar disorder can involve alternating periods of stability and phases of major depression or mania that call for sustained vigilance, a high degree of adaptability and knowledge of early warning signs (57, 58).
• Major depression may require caregivers to cope with the care recipient’s emotional withdrawal and assume increasing responsibility for daily activities (141).
• Borderline personality disorder is associated with particularly high levels of caregiver burden due to the intense interpersonal difficulties that characterize it, often generating feelings of guilt, helplessness and despair among caregivers (88).
• Eating disorders often require caregivers to monitor eating-related behaviours around mealtimes, which can be a significant source of interpersonal tension and give rise to feelings of guilt (142).
• Anxiety disorders often lead caregivers to alter their own lifestyles to avoid exposing their loved one to stress, which can result in significant emotional fatigue (56).

The type and severity of the mental health problem thus directly influence the caregiver’s responsibilities (89).

ENTRY INTO CAREGIVING

When mental health problems first emerge, caregivers often experience confusion and a sense of helplessness in response to their loved one’s behaviour (12).

A key challenge during this period is recognizing emerging symptoms for what they are and judging their severity. Recognition is not always immediate: early indicators of distress — including social withdrawal, unusual behaviour, mood fluctuations or incoherent speech — are often perceived as temporary or attributed to other causes, particularly among young people (13,14).

An acute crisis episode, particularly when it occurs for the first time, is often a critical turning point that disrupts established relationship patterns and demands immediate adaptation (15, 91). The onset of caregiving frequently coincides with this period, compelling caregivers to rapidly reorganize daily routines while developing the knowledge, skills and capacities needed to support the person (17).

Periods of mental stability for the care recipient

Periods of stability are intervals during which the symptoms of a person living with a mental health problem are controlled or significantly reduced, improving their overall functioning. Whether temporary or long-term, these periods often bring hope to caregivers, as the possibility of sustained well-being and recovery appears more attainable (10). They also represent valuable opportunities for caregivers to attend to their own health and well-being. The stability they afford can allow families to reconfigure their routines and redefine how best to support the evolving needs of the person receiving care (113).

Such periods can also provide an opportunity for both caregiver and care recipient to step back and develop a greater acceptance of the mental health condition. For people living with a mental health problem, acceptance can encourage active engagement in developing coping skills and is associated with a better quality of life, less distress and a reduction in some symptoms (79, 80). For caregivers, acceptance can likewise support adjustment by fostering a better understanding of behaviours associated with mental health problems, helping them reassess expectations and adapt the support they provide (79).

Still, these periods should not be mistaken for recovery. In mental health, recovery is a personal and ongoing process that goes beyond reducing symptoms or maintaining a stable state. It involves drawing on personal strengths, developing new skills, and learning to live with the challenges of a mental health condition while continuing to pursue personal goals and potential (64). In this process, caregivers play a vital role by providing emotional and relational support, fostering a sense of belonging, and reducing isolation, all of which are essential to recovery. Their presence and commitment can also help the care recipient feel heard, respected in their choices, and more confident in exercising their autonomy. Caregivers further contribute by creating a safe and supportive environment in which the person can try new approaches, make decisions, and learn from both successes and setbacks (81).

This involvement, however, can come at a significant cost to the caregiver’s own health, particularly when caregiving becomes intense or all-consuming (52, 101, 118). The role can place considerable physical and psychological demands on caregivers, especially over long periods marked by uncertainty and the need for constant vigilance (54). Nor does vigilance necessarily diminish during periods of stability. Even when their loved one’s condition improves, many caregivers remain on high alert, watching for early signs of relapse (74). Over time, this persistent state of alertness can evolve into hypervigilance, giving rise to ongoing anticipatory stress that is difficult to switch off (72). In the longer term, caregivers may also experience social isolation, financial strain, disruptions to their employment or education, and emotional challenges such as persistent worry, frustration and feelings of helplessness (69).

Crisis episodes among care recipient

Mental health crises occur when the person being supported experiences a worsening of their difficulties. This can manifest as a significant disruption in their psychological, emotional or behavioural state, making everyday life and relationships harder to manage. Crisis episodes can take many forms, including psychotic symptoms, increased substance use, periods of housing instability or homelessness, and suicidal behaviours.

These periods often require prompt intervention (i.e., at the first signs) to prevent the situation from worsening or risks to the person or others from escalating (18). For caregivers, such periods are particularly challenging. Not only do caregiving responsibilities increase, but witnessing the suffering of a loved one is, in and of itself, an emotional ordeal (18, 90).

Furthermore, some crises are particularly acute, going so far as to encompass violent or risky behaviour. Caregivers must remain highly vigilant in these situations, which may involve significant safety concerns (16, 19, 20, 21).

First crisis episode

During a first crisis — which may also mark the start of caregiving — caregivers often know very little about mental health issues or the available support services. As a result, they can feel confused, overwhelmed and helpless (18, 64).

Relapse

The recurrence or worsening of mental health problems, also referred to as relapse, occurs when clinical manifestations return or intensify following a period of stability, improvement or progress toward recovery. These episodes can vary in severity and duration and often present a major challenge (23, 24).

For caregivers, relapse frequently involves a rapid decline in the care recipient’s mental health, generating a sense of urgency and heightened concern or fear (102). In response, caregivers often become more vigilant and may need to adjust the support they provide (26). Over time, this can increase their emotional and physical strain, contribute to chronic stress and heighten the risk of burnout, particularly when crisis management seems part of an endless cycle of stability and relapse (27).

Suicidal thoughts or behaviours

Supporting someone with mental health problems who is experiencing suicidal thoughts or behaviours can expose caregivers to high levels of stress and emotional distress. Beyond the immediate crisis, caregivers may feel the need to remain constantly “on guard” for signs of suicidal risk — a pressure that significantly adds to their burden.

Suicide attempts are particularly traumatic for caregivers, generating feelings of helplessness, guilt and intense fear (28, 29). Crises involving risky behaviours — for example, suicidal threats or self-harm — require rapid intervention to ensure the person’s safety (3). At such times, caregivers must manage not only their own emotional reactions, but also the distress of other family members or friends, all the while seeking timely help for their loved one (90).

Substance use

Periods in which a care recipient experiences both mental health problems and substance use (e.g., alcohol, cannabis, cocaine, non-prescribed medication) are particularly complex. Not only can substance use exacerbate anxiety, depression or psychotic symptoms (30), but these periods are often accompanied by risky behaviours and significant instability (31). Caregivers therefore face a dual challenge: supporting their loved one while managing the ways in which substance use compounds their mental health difficulties.

Housing instability or homelessness

When a care recipient experiences housing instability, the caregiving burden intensifies considerably, accompanied by heightened uncertainty, greater stress and a higher risk of burnout (32). Caregivers must often provide support in contexts of extreme instability while finding temporary solutions to ensure the person’s safety (33). With access to mental health and housing services severely limited, caregivers frequently find themselves forced to coordinate support on their own (34).

Unstable housing conditions and exposure to unpredictable environments can also worsen the care recipient’s mental health, further compounding the caregiver’s burden and stress (41, 65). Caregivers often play a direct role in maintaining housing stability, whether by taking their loved one into their own home, helping to cover rent, managing administrative tasks, or liaising with landlords and services. In doing so, they may fear that pulling back, declining requests or setting limits on their availability could deprive their loved one of support that is essential to keeping them housed, ultimately leading to housing loss or homelessness. This fear often causes caregivers to push past their own limits, at a cost to their well-being (102).

When caregivers lose contact with the care recipient for an extended period, the caregiving trajectory may be paused or come to an end entirely — a difficult moment that can involve grief, painful questioning and a need to reorganize one’s life (103).

Episodes of care for the care recipient

An episode of mental health care is a period during which an individual receives a continuum of coordinated actions aimed at stabilizing their condition, meeting their immediate needs and supporting their recovery (25). This may include outpatient consultations, hospitalization, emergency care, therapy sessions, and/or follow-up with mental health professionals (12).

The duration and intensity of the episodes will vary based on a number of factors: access to services, the nature of the problem, symptom severity, and the individual’s social context. A mental health trajectory is never linear and may therefore consist of several episodes of care that vary in intensity and frequency, alternating with periods of relative stability or service interruptions (12).

Diagnosis

A diagnosis is a process by which a mental health professional identifies and names a disorder based on observed symptoms, standardized criteria and the individual’s clinical history (73). Not everyone living with a mental health problem receives a diagnosis, and obtaining one can be a long and complex process, given extended wait times in the public system and the high cost of private services (42).

The absence of a diagnosis — whether due to service inaccessibility, diffuse symptoms or the refusal of care — can heighten uncertainty, leaving caregivers without a clear path forward and ultimately contributing to burnout (118). It can also cause those around the care recipient, including caregivers themselves, to interpret symptoms as deliberate choices or wilful behaviour, damaging relationships and deepening caregivers’ sense of isolation (118).

Conversely, receiving a diagnosis can be a pivotal moment in the caregiving trajectory. While it may come as a shock and cause significant emotional upheaval (48), it also allows caregivers to name what they have been experiencing and opens the door to more appropriate support. In this way, a diagnosis can serve as a breakthrough in the journey of care:

Hospitalization

Hospitalization often stands as the primary entry point to services, inasmuch as the care recipient’s condition may have to deteriorate significantly before access to care becomes possible. It can occur willingly or against the wishes of the person with the mental health problem (forced hospitalization) — including within a legal context, where a person may be brought in for assessment or placed under involuntary confinement. While hospitalization provides access to specialized care and is sometimes the only way to obtain appropriate support, caregivers generally experience it as a failure on their part, which comes with a significant emotional toll (38, 75).

The quality of the hospital experience depends largely on the relationship between the caregiver and health professionals. Clear communication, recognition of the caregiver’s role and their inclusion in the care process all facilitate collaboration and reduce caregiver distress (37, 39).

The return home after hospitalization is a critical phase. Caregivers must ensure continuity of care, adjust their day-to-day role, and balance this commitment with their personal and professional responsibilities. Due both to limited services and the legal constraints surrounding forced hospitalization, stays may be short and may not always allow for full stabilization (49). When the return home occurs before the crisis is completely resolved, caregivers can be thrust into the difficult position of having to shift from a supportive role to active illness management (102).

Outpatient care

Outpatient care refers to all mental health services provided to an individual, barring hospitalization (107). These services may include consultations with psychiatrists, psychologists and psychosocial workers, individual or group therapy sessions, and medication management and follow-up.

For caregivers, outpatient care often represents an important opportunity for involvement in the care trajectory. They can accompany the care recipient to appointments, support treatment management and help detect early signs of symptom recurrence or worsening (2). However, this role can also give rise to difficulties, particularly when access to clinical information is limited or when professionals do not sufficiently value the caregiver’s expertise (37).

Medication adherence

Caregivers frequently play a central role in supporting medication adherence among care recipients, particularly when medication is necessary to stabilize symptoms and reduce the risk of relapse (26). Yet this responsibility may also generate tension and place caregivers under considerable strain, requiring ongoing vigilance, particularly when the care recipient resists treatment, experiences unpleasant side effects, or expresses doubts as to its effectiveness (108, 111).

End of an episode of care

In the mental health care trajectory, the end of an episode of care often represents a critical juncture for caregivers. When services cease abruptly and without a planned transition, caregivers may find themselves solely responsible for providing support — sometimes for extended periods and minus the necessary resources (76, 112). This transfer of responsibilities, which is frequently unplanned, can intensify caregivers’ feelings of abandonment and helplessness (85).

A preventive approach would involve discussing the end of services with both the care recipient and their caregiver at least one week in advance, in order to clarify the steps to be taken in the event of a relapse or crisis (1). Communication and coordination with care teams can foster better planning and a clearer understanding of how to reactivate support if needed, thereby reducing the caregiver’s burden.

Transformation of the relationship and role reconfiguration

The role played by caregivers in mental health is profoundly dynamic and evolves alongside the trajectory of the care recipient (47). The caregiving trajectory is marked by an ongoing adaptation of the caregiver role, as each event — an improvement or deterioration in mental health, a change in medication, the beginning or end of an episode of care, new boundaries within the relationship, and so on — requires adjustment on the emotional, relational and practical levels (128, 131). Although this adaptation is continuous, change is more likely to occur at certain key points in the trajectory, such as the entry into caregiving, crisis periods or episodes of care.

These transitions affect more than the organization of care: they also require caregivers to continually renegotiate their relationship with the care recipient as expectations shift and relational dynamics are reshaped. Certain symptoms associated with mental health problems can place additional strain on these relationships and trigger emotional distress (10). For example, the emotional withdrawal associated with mood disorders may be experienced as indifference or rejection, while delusions associated with psychotic disorders can directly harm or destabilize the caregiver (10, 112). Similarly, in the context of borderline personality disorder, patterns of idealization and devaluation can leave caregivers feeling rejected, powerless or emotionally unsettled (40). The process of redefining the relationship can lead some caregivers to question whether to continue the relationship or establish different boundaries.

Conversely, the caregiving relationship can also strengthen bonds between caregivers, care recipients, and their broader support networks. Some caregivers report improved mutual understanding and a deepening of their relationship with the person receiving care (94). Families coping with the challenges of mental health conditions may also develop a shared capacity to overcome difficulties, fostering feelings of mutual admiration (121, 129).

Through these relational changes, caregivers may also experience a “parallel recovery” alongside that of the person they support. This process involves psychological and emotional growth through learning, adaptation, and in many cases, personal rebuilding in response to the challenges associated with the caregiving role (85). For example, past events may be reinterpreted through the lens of the diagnosis, expectations for the future reshaped, or roles within the family redefined.

Helping seeking support for the help recipient

Mental health caregivers play a crucial role in securing support for the person they care for: they detect signs of a deteriorating mental state, take steps to obtain care, and act as intermediaries between the care recipient and the available services (45, 68). They are often the first to identify warning signs of a crisis or an emerging need for support — all of which demands heightened vigilance, constant availability and continual adaptation (69).

When their loved one’s mental health deteriorates, caregivers are typically the first to intervene, making repeated calls and attempts to obtain hospitalization or services. This can prove extremely difficult, particularly when the care recipient refuses help or denies the severity of their symptoms (17, 45). The lack of appropriate services, cumbersome administrative processes and inadequate support for caregivers further compound the caregiver’s sense of helplessness, especially when their loved one’s safety is at stake.

Crises involving risky behaviours (e.g., suicidal behaviour, self-harm, substance use or self-medication) require rapid intervention to ensure the safety of both the care recipient and their caregiver (70, 71, 92). Access to immediate care, however, is often limited by strict admission criteria, including the requirement to demonstrate that the person poses an imminent danger to themselves or others, which can delay treatment (38). This delay adds to the emotional burden on caregivers, who are frequently isolated and inadequately supported during these critical moments (38, 92).

The end of caregiving

The end of caregiving marks a turning point that can take many forms and represent a significant transition period for caregivers.

An exit from caregiving can be voluntary or imposed by circumstance. It may occur when the care recipient’s need for support diminishes or ceases, upon their death, or when the caregiver withdraws from the role (85). In some cases, the caregiver may choose to step back to safeguard their own well-being. In others, it is the care recipient who refuses support and ends the relationship. It also happens that the care recipient disappears without their caregivers knowing where they have gone.

The loss of a bond between a caregiver and care recipient may be permanent, but it can also be of uncertain duration or intermittent. Re-establishing the bond brings about a return to active caregiving (see Return to caregiving). Even when contact is broken, many caregivers continue to experience anxiety and concern about their loved one’s well-being (85).

Some caregivers never experience a true exit from caregiving. Their role continues for years, sometimes ending only with their own death. This situation is particularly common among parents who support a child, as well as among siblings who support a brother or sister living with a mental health problem (35, 36).

The end of caregiving: specificities in the context of violent death

Caregiving that ends in the context of a violent, sudden, or traumatic death (e.g., suicide, overdose, homicide) can result in complicated grief. Research shows that this type of loss is associated with higher rates of post-traumatic stress disorder, depression, anxiety and prolonged grief than anticipated deaths (84). For caregivers, distress may be compounded by feelings of responsibility, helplessness or guilt—particularly in cases of suicide linked to mental health problems.

Deaths of this kind may also involve police investigations, legal proceedings, media attention or social stigma, all of which can intensify caregivers’ isolation and complicate access to support (70, 71). The quality of support provided following such events plays an important role in how grief unfolds. A lack of recognition of the trauma, a minimization of suffering, or the absence of specialized services can exacerbate and prolong distress (145).

Post-caregiving

Post-caregiving refers to the period that follows the end of caregiving. It represents not only the cessation of support, but also a time of transition and personal reorganization. Caregiving responsibilities are often deeply interwoven with a caregiver’s daily life and sense of identity. The end of this role can therefore lead to a period of destabilization, requiring significant adaptation (47, 84, 128). Caregivers may need to redefine their routines, relationships and identities after having for so long built their lives around providing support.

This period may be accompanied by ambivalent emotions. While caregivers may experience relief, particularly when their role has been highly demanding, they may also experience a sense of loss or emptiness, especially when caregiving has been central to their lives.

For some caregivers, post-caregiving is also part of the grieving process that follows the care recipient’s death or disappearance. In these situations, the grief may be twofold, encompassing both the loss of a loved one and the loss of a major role in their own life. This layered grief may be anticipated, prolonged, or both, particularly when the caregiving relationship has significantly shaped the caregiver’s own life plans and routines (102).

Return to caregiving

Following an interruption in care (whether due to the care recipient’s absence, a break in the relationship, or the complete cessation of support), some caregivers may return to active caregiving, resuming their role either suddenly or gradually (102). It is important to note that, regardless of the duration of the interruption, caregivers often continue to worry and remain concerned about the care recipient (85).

Caregiver collaboration and partnership with care teams

Throughout the trajectory, collaboration between caregivers and mental health teams is essential to improving the quality of interventions and supporting both care recipients and caregivers. Nonetheless, such collaboration is often tenuous, hindered by barriers like insufficient professional training and confidentiality constraints (85).

Recognition by professionals is key to fostering collaboration. Caregivers who feel heard and valued report reduced isolation and distress (37). Conversely, caregivers whose observations and expertise are dismissed or who are excluded from the process tend to experience heightened loneliness, which compromises collaboration.

Caregivers possess a nuanced and irreplaceable understanding of the everyday realities of the people they support, yet this knowledge is often undervalued by care teams (98). The systematic inclusion of caregivers as care partners is not only beneficial but necessary to reduce relapse rates, alleviate family stress and improve the effectiveness of care (85).

Constructive collaboration is grounded in the mutual recognition of expertise: professionals contribute clinical knowledge, while caregivers enrich interventions through their in-depth knowledge of both the lived experiences and needs of the person they support (146). To foster this collaboration, it is essential to train teams in caregiver inclusion and provide safe spaces for dialogue where caregivers can share their experiences without fear of being judged or marginalized (148).

Recognition

Coming to recognize their role helps caregivers feel less alone, acknowledge the responsibilities caregiving entails, better understand its impact on their lives, and learn about the services and support measures to which they are entitled (134). This self-recognition can occur at any time during the caregiving trajectory.

The support provided by caregivers to someone with a mental health problem is often perceived as “natural,” arising from family or emotional ties rather than being acknowledged as a distinct role. In this context, caregivers may have difficulty recognizing their role for what it is, preferring to see themselves primarily as a child, spouse or friend rather than a “caregiver.” This can hinder not only self-identification with the role, but also the broader social recognition of caregiving (87). Stigma by association — when caregivers are exposed to the same judgments and prejudices as the person they support — can further limit recognition, keeping caregiving in the shadows, hidden and largely invisible (133). Nor are caregivers always recognized as such by the person they support.

Some neurological or mental health conditions can lead to limited awareness of illness or impairment (anosognosia), while in other cases, an individual may deny their difficulties as a form of self-protection (45, 124). In such situations, care recipients may be unable or unwilling to recognize the support provided by caregivers (98). Recognition from others is also important: when neither the care recipient nor their wider social circle acknowledges this support, caregivers may find it more difficult to identify with and define their own role.

Some sub-groups of mental health caregivers — notably young people, women and people from minority communities — are less likely to identify with the role, largely due to concerns about stigmatization. For instance, some may worry that calling themselves a “caregiver” could negatively affect the reputation of the person they support or reinforce negative perceptions about them (133, 134).

Spouses and parents also tend not to identify as caregivers, albeit for different reasons. Rather than concerns about social perceptions, they often view the support they provide as a natural extension of their role as partner or parent (69).

Caregiver support and resources

Supporting someone living with a mental health problem places considerable pressure on caregivers, with well-documented repercussions:

• Emotional impact: The emotional burden on caregivers is exacerbated by constant stress, worries about the future, and managing largely unpredictable crisis episodes, often in a context where their own needs are relegated to the background. Caregivers describe an entire spectrum of difficult emotions, including fear, guilt, resentment, frustration and helplessness, as well as symptoms of anxiety and depression, including suicidal thoughts (94).
• Social impact: The time and energy required for caregiving leave little room for social interactions or leisure activities (94, 98). Many caregivers report that their role forces them to reduce the size of their social network and the time spent maintaining it (94). Some even avoid social events to escape stigmatizing attitudes or derogatory remarks directed at them or their loved one (155).
• Financial impact: Caregivers often incur direct costs such as travel expenses or medication and equipment purchases. These expenses are frequently compounded by reduced working hours or an inability to remain in employment due to exhaustion (156).

Access to diverse resources and support throughout the trajectory is essential to prevent caregiver burnout, reduce isolation, and strengthen their ability to support their loved ones while maintaining their own work/life balance (28). Various forms of support are available to caregivers.

Mental health awareness

Mental health stigma and discrimination are major barriers to seeking help and accessing services (116). For example, stigma by association experienced by caregivers can prevent them from identifying with their role, thereby hindering their access to support (63). In practice, many caregivers try to conceal their loved one’s difficulties to avoid the shame and social rejection associated with mental health problems, further isolating themselves and delaying their own help-seeking (100). It is therefore essential, as a society, to reduce mental health stereotypes and raise public awareness in order to reduce the stigma experienced by both those affected and their caregivers.

Information and awareness

Information and training in the form of workshops, videos or manuals are very well received by caregivers (69, 79, 123). Positive outcomes include increased self-confidence, better understanding of mental health issues, reduced anxiety, and empowerment (123). Information about mental health problems has also been shown to lessen feelings of isolation.

Support from family and friends

Support from a caregiver’s immediate circle is a crucial resource. The effectiveness of this support often depends on the size of the caregiver’s social network as well as the quality of the relationships (78, 86).

Support from family and friends helps reduce feelings of isolation, facilitates the management of daily care, and alleviates the emotional burden experienced by caregivers (50).

Psychosocial support

Psychosocial support refers to a set of interventions that target both the psychological (thoughts, emotions, behaviours) and social (relationships, support, integration) dimensions of an individual experiencing distress or vulnerability (87). For mental health caregivers, this support can take several forms, including individual therapy, support groups, psychoeducation, and family interventions (158).

One of the most well-documented approaches for mental health caregivers is psychoeducation, which aims to impart structured knowledge about mental health problems, treatments and manifestations while developing caregivers’ coping skills (158). Emotional and motivational components are also included to help caregivers better manage their lives and the support they provide. The benefits are numerous: reduced burden, fewer depressive symptoms, improved well-being, enhanced knowledge about the illness, and stronger problem-solving skills.

Specialized psychosocial support can thus reduce isolation, normalize emotions and strengthen coping strategies (31). However, access to this type of support is often limited (85).

Peer support

Peer support groups and helplines are spaces that help break isolation and foster the sharing of experiences — a crucial consideration for caregivers (11). Self-help groups are particularly important, as they allow caregivers to discuss their situations, ask questions and receive support in a caring environment. Increasingly, caregivers are using forums, Facebook groups or dedicated digital platforms to connect and find support. These virtual spaces offer broad accessibility and a sense of belonging, although the information shared may not always be reliable (62).

Family peer support

Appropriate support can also be provided through connections with family peer supporters, who share similar experiences and can offer valuable assistance (61). This type of resource aims not only to support caregiver health and well-being, but also to provide practical tools to help them manage their role and navigate the available services.

Spirituality

For many caregivers, spiritual or religious practices are a source of comfort and strength (104, 105, 106). Some look to prayer or meditation for solace and to help them cope with their daily challenges (94).

Addressing religious and spiritual needs within care relationships with professionals can be highly beneficial. When this dimension is important to the individual, it may be appropriate to integrate these resources into clinical services (60).

Financial aid

The financial support needs of mental health caregivers are frequently underestimated, particularly if the caregiver is still employed (59, 110, 156). Financial aid programs exist, but access to them remains conditional and is often subject to restrictive eligibility criteria.