Commentary on Suicide in Family Caregivers: State of the Field

More than 700,000 people die by suicide each year¹—and an uncounted number of these are family caregivers who experience caregiver strain, burden, financial difficulties, and mental health symptoms.² Elevated rates of suicidal ideation (SI) in family caregivers have been reported on five continents: Europe,³ Asia,⁴ Australia,⁵ South America,⁶ and North America.⁷ In the largest study of caregiver SI to date, which involved more than 10,000 people, the U.S. Centers for Disease Control in 2021 reported that ~30% of family caregivers experienced serious SI in the prior month, and that the odds of SI in caregivers of people with cognitive complaints or other chronic health conditions were more than 3x higher than for non-caregivers.⁷

Caregiver SI is not benign: severe adverse consequences of SI for caregivers and those they are caring for have been reported. Caregiver death by suicide has been documented in a large, census-based study in Ireland,⁸ and a few small reports in Korea⁹ and the United States.¹⁰ Although in caregivers with good mental health, caregiving and responsibility to family might be protective factors for suicide, caregivers with poor mental health evince similar rates of suicide to the general population.⁸ Adverse associations of caregiver SI for people living with dementia (and possibly for other patients with chronic health conditions) include higher rates of abusive behaviors,¹¹ and in cases when coupled with homicidal thoughts, homicide-suicide.^9,10 Thus, although standard algorithms for suicide risk stratification identify protective effects of responsibility to family, this factor clearly has its limits.

HOW CAREGIVERS COPE WITH SI

Caregivers experiencing SI may exhibit maladaptive or adaptive coping behaviors. Caregivers may engage in maladaptive avoidance of symptoms and their triggers, or alternatively, they may show adaptive coping responses such as seeking peer support and treatment to ameliorate symptoms (Table 1).

Table 1:

Caregiver coping behaviors in response to SI

Maladaptive avoidance coping

∘ Drugs, alcohol

∘ Mindless screen time, other distractions

∘ Avoiding the trigger (person with illness) via institutionalization

∘ Abandoning the caregiver role

∘ Death by suicide (or rarely homicide-suicide)

Adaptive help-seeking

∘ Support groups

∘ Individual or group psychotherapy

∘ Antidepressant (or other) medications

∘ Identification and utilization of caregiver supportive resources (e.g. respite care, financial planning)

In the present environment, caregivers who are most likely to exhibit adaptive help-seeking in formal caregiver support programs and research studies are also probably those least likely to have serious SI. Signing up for caregiver programs requires motivation and focus (which is reduced in those with depression) and willingness to engage socially with unfamiliar people, often in a group setting. Joining a group can be a stressful and anxiety provoking experience, particularly for those who live with a high degree of self-criticism and shame, as do many with elevated SI. People with SI are more likely to demonstrate a high degree of neuroticism (predisposition to intense negative emotions with stress such as that of trying to fit into a new social group), which could also result in early drop out from support groups or other programs. An important topic for future research is to document the rate at which caregivers with serious SI participate in caregiver support programs or enroll in research trials versus the extent of serious SI identified in observational caregiver research.

LIMITATIONS OF EVIDENCE-BASED CARE FOR CAREGIVER SI

Although more than 50 studies have documented elevated rates of SI among family caregivers, and several studies are available to guide interventions to support caregivers of “patients” with SI, what should be done for family caregivers who themselves experience SI? Literature on this topic is almost non-existent, and no information is available from large trials of caregiver support interventions.

Earlier this year, the first pilot randomized, controlled trial that specifically analyzed changes in SI in family caregivers was published.¹² This small trial targeted family caregivers of people living with dementia, a population on which much of the observational literature on caregiver SI has focused.² In this trial, the subgroup of 12 caregivers with SI assigned to a psychoeducational support group—the most common form of treatment recommended for caregivers in community settings—showed no reductions in SI, depression, or stress. However, in the mentalizing imagery therapy arm (a mindfulness and empathic perspective-taking intervention), caregivers (n=11) demonstrated reduced SI, depression and stress. Clearly, more studies of this kind in larger samples are needed.

If SI is detected in a family caregiver in clinical practice, the caregiver may be referred for evidence-based treatment such as psychopharmacologic treatment and psychotherapy. However, given the self-abnegation of many caregivers in service of their relatives—particularly in minority populations^13,14—it is unclear to what extent standard psychological approaches are acceptable for and preferred by this population. In practice, it has been observed that caregivers often do not attend to their own medical care, and do not engage in healthy behaviors such as exercise that might mitigate symptoms. Similarly, they often may not spontaneously report their own SI, requiring proactive screening.

A RESEARCH AND CLINICAL AGENDA

In 2015, the United Nations targeted a 1/3 reduction in early death due to mental disorders by 2030, measured by global deaths due to suicide (Sustainable Development Goal 3.4). Although there was a brief dip in suicide during the COVID-19 pandemic, rates have once again since increased.¹⁵ Additional resources are clearly needed to stem the increase in suicide deaths. To reduce the risk of suicide among caregivers, a concerted effort is needed among researchers and clinicians to identify and treat SI, including with broader and more coordinated efforts that address both SI and SI-related behaviors.

Studies of suicidality in caregivers have focused on SI and (to a much smaller extent) mortality, but not on suicide attempts or self-harming behaviors. Most caregivers are women and women are more likely to attempt suicide than die by suicide than are males. Due to a lack of studies of suicide behaviors in caregivers (self-harming, suicide attempts), it is unclear to what extent SI in this population is associated with additional health complications and treatments, e.g. emergency room visits, hospitalizations.

Older adult male caregivers (typically spouses) are likely to comprise a high-risk population and should be specifically engaged. Over the past 25 years, suicide rates have increased for those aged 65 years and older, with men at particular risk.¹⁶ Many support groups are mostly or entirely female, and may not provide male-male companionship or specific discussion of personal challenges in a setting comfortable for males, particularly regarding processing of more severe SI or even homicidal thoughts. Suicide risk also increases for older men after the death of a spouse.¹⁷ How best to help older adult male caregivers with SI is an important topic for future research.

Epidemiological studies on access to specialty mental health also underline an acute need for expanding the range of services and therapies for caregivers with SI. In the U.S. in 2021, two-thirds of those with mental health disorders did not receive specialty care, and of those on Medicare, only 15.7% saw a behavioral health specialist, illustrating a large gap in care that is particularly acute for older adults.¹⁸ Barriers to receiving mental health care include a shortage of mental and behavioral health specialists, and consumer self-reported “lack of time” to obtain care, affordability, and stigma, including fears of others having a negative opinion.¹⁹ More specific interventions for caregivers that identify those with SI and severe psychological distress, early in the context of routine clinical care for the patient with chronic illness, may help this vulnerable caregiver population normalize their emotional responses and receive preventative treatment. However, without specific outreach, screening, and referral to programs that are inclusive for caregivers with SI, it is likely that many will forgo care, potentially resulting in serious and avoidable negative outcomes.

Barriers within the healthcare delivery system must be overcome to identify and improve the care of caregivers with serious SI. Medicolegally and financially, physicians are rewarded and reimbursed based on whether they have provided appropriate care to the patient. If physicians do not recognize and report serious problems among caregivers that impact the patient, such as elder abuse and neglect, they may be sanctioned. However, there are no external rewards or incentives for identifying and treating the high burden of emotional needs among caregivers in primary care, neurology, or other subspecialty clinics. Identifying caregiving SI may be time-consuming and add additional burden and strain on physicians who are then duty-bound to provide additional resources and referrals. Creating collaborative systems of care with increased integration between behavioral and mental health clinicians and clinicians caring for patients with chronic health issues such as dementia is necessary to address this gap in care.

Recognizing that the needs of people living with dementia extended to training and supporting their caregivers, the Centers for Medicare and Medicaid Services in 2024 launched the GUIDE model, Guiding an Improved Dementia Experience, which formalizes reimbursement mechanisms for a care navigator to facilitate caregiver support and other services. This 8-year program studies a new model for improving quality of care for people living with dementia and reducing strain on family caregivers. Required elements of GUIDE include monitoring caregiver burden, training caregivers in skills such as those required to support activities of daily living for the person living with dementia, and screening the caregiver for depression, anxiety, and SI. This represents an important step forward that, if successful, could be adapted for caregivers of those with other chronic health conditions.

National and international funding and advocacy organizations serving caregivers can help prevent caregiver suicide by bringing it to the forefront of the research and clinical agenda. By developing and implementing treatments that serve the most serious levels of caregiver SI and psychopathology, much may be learned that can strengthen the relatively modest effects of caregiver interventions on emotional symptoms,²⁰ benefiting the entire caregiver community. High priority should thus be placed on studies of new treatments and implementation strategies for caregiver SI, with large samples and in diverse and inclusive populations.

SUMMARY AND CONCLUSIONS

Family caregiver suicide is a devastating outcome related to caregiver stress, burden, poor mental health, and financial challenges, among other difficulties. Suicide deaths occur even in those least thought to be at risk, and those without significant mental health disorders. Elevated rates of family caregiver SI are also extremely worrisome, particularly given the high likelihood of maladaptive coping and negative outcomes for relatives with chronic illness. There is a large research gap between identification of elevated rates of caregiver SI in epidemiological and observational studies, and an understanding of how caregiver support interventions impact caregiver SI. Existing therapies and support interventions should be studied for their effects on caregiver SI, and new caregiver support interventions should be developed and studied that incorporate solutions to address the SI that many caregivers develop in the context of caregiving. Targeted efforts to raise awareness about caregiver SI, promote early identification of caregivers at risk, and provide treatment as part of an integrated approach to caregiver support, may help to broaden the population of caregivers with SI who receive life-saving care.