By Marcela Guadalupe Cerecedo Martínez | Ciencia Amateur
Reviewing author Sofía Sánchez Román
In many families, the process starts when illness advances and reshapes daily life.
A study by Tecnológico de Monterrey, in collaboration with the National Institute of Medical Sciences and Nutrition Salvador Zubirán (INCMNSZ), examines how caregivers experience grief before loss and how it relates to anxiety, depression, and physical and emotional burden. Recognizing this process early can improve psychological care in clinical settings.
“He’s still here, but I feel like I’m already losing him,” a woman said as she accompanied her husband—who is living with advanced cancer—during his treatment at INCMNSZ.
Her words capture a phenomenon more common than it seems: anticipatory grief, a form of farewell that unfolds while life and caregiving continue. To better understand this process, researchers conducted a descriptive study with family members of patients with advanced chronic illness treated at the institute.
What Is Anticipatory Grief?
Anticipatory grief emerges when family members begin to feel loss as illness progresses. It may manifest as deep sadness, fear of the future, repetitive thoughts, emotional exhaustion, and a constant sense of uncertainty.
Although it is a natural response—and in many cases a necessary one for adaptation—it can become harmful when combined with high emotional stress, limited support networks, or physical overload.
Unlike grief after death, this type occurs while caregivers remain active: accompanying their loved one, making decisions, overseeing treatments, and providing both physical and emotional support.
It is like carrying a backpack that grows a little heavier each day: it is never set down, rest is incomplete, and it is almost always borne in silence.
What Does the Study Examine?
The research seeks to understand how families experience pre-loss grief—the farewell that begins as they accompany a loved one with advanced chronic illness—using a psychological research questionnaire designed for this purpose, known as the PG-12-R.
It also analyzes how pre-loss grief relates to three core factors:
- Anxiety, measured using the Generalized Anxiety Disorder-7 (GAD-7) questionnaire.
- Depression, assessed with the Patient Health Questionnaire-9 (PHQ-9).
- Caregiver burden, measured through the Zarit interview.
The ultimate goal is to understand how these emotional experiences interact for those accompanying a prolonged illness and to make visible their impact on daily life.
The study shows that anticipatory grief is a real, deep, and highly prevalent process. It is not simply sadness before loss, but a complex emotional state where anxiety, depression, caregiver burden, and—above all—profound uncertainty converge.
Recognizing these patterns allows for better support of caregivers, offering tools and intervening before exhaustion turns into prolonged or unhealthy grief. Caring for the caregiver—seeing them, listening to them, and offering support—is also an essential way of caring for the patient.
Living in a State of Alert
So far, 76 family members of people living with advanced, chronic, degenerative, and incurable illnesses (including advanced cancer and neurological, respiratory, and cardiovascular diseases) have been evaluated. Six in ten caregivers showed some level of anxiety, and one in four experienced moderate to severe anxiety.
Most participants were women caring for a relative with an oncological diagnosis, the most common condition in the sample.
Anxiety often stems from uncertainty. About 71.1 percent of caregivers do not know their loved one’s life expectancy—a fact that alone creates a constant state of alert.
It is a way of living in continuous emotional vigilance, as if the mind can never lower its guard. This anxiety affects sleep, decision-making, and sometimes the ability to continue providing care.
Silent Sadness
The study also found that 71 percent of caregivers experience some level of depression, mainly mild to moderate.
The numbers become clearer when looking at daily experiences. More than 70 percent report intense longing for the patient’s previous state; half describe deep emotional pain. About 36.8 percent report constant worry, and 35.5 percent have difficulty accepting the illness.
For healthcare professionals, this sadness may be mistaken for “fatigue,” but it is in fact a sign of profound emotional wear.
Caregiver Burden
Caregiver burden involves excessive responsibilities, physically demanding tasks, financial strain, lack of support, and social isolation. While most caregivers do not experience severe burden, 18.4 percent do.
Analyses showed a clear relationship: those with higher caregiver burden also reported higher levels of anticipatory grief.
Imagine someone holding a rope that grows tighter day after day. Anticipatory grief is the emotional tension; caregiver burden is the physical effort of holding that rope with one’s entire body.
When both forces accumulate, the strain can be significant. Recognizing it early allows for intervention before the rope finally breaks.
Maladaptive anticipatory grief often goes hand in hand with depression and is also linked to anxiety. Depression and anxiety tend to intensify one another.
This means the caregiver’s experience is holistic, not fragmented: worry feeds sadness, sadness increases exhaustion, and over time everything becomes harder to sustain.
A notable finding is that younger caregivers reported higher levels of anticipatory grief, anxiety, and depression. Facing the possibility of losing a loved one at an early age can be especially emotionally disruptive.
Understanding these relationships allows physicians, psychologists, and healthcare professionals to:
- Identify caregivers at risk of developing pathological grief.
- Offer emotional support before crises emerge.
- Prevent complications such as severe depression or burnout.
- Develop targeted interventions for those accompanying prolonged illness.
References
- Coelho, A., de Brito, M., & Barbosa, A. (2018). Caregiver anticipatory grief: phenomenology, assessment and clinical interventions. Current Opinion in Supportive and Palliative Care, 12(1), 52–57.
- Li, C., Tang, N., Yang, L., Zeng, Q., Yu, T., Pu, X., Wang, J., & Zhang, H. (2023). Effect of caregiver burden on anticipatory grief among caregivers of elderly cancer patients: Chain mediation role of family functioning and resilience. Frontiers in Psychology, 13.
- Gómez, I. B., Gallego-Alberto, L., Baltar, A. L., Herrera, L. M., Batalloso, I. G., & Márquez-González, M. (2023). Duelo anticipado en familiares de personas con demencia. Variables psicosociales asociadas y su impacto sobre la salud del cuidador. Una revisión de literatura. Revista Española de Geriatría y Gerontología, 58(4), 101374.
- Treml, J., Schmidt, V., Nagl, M., & Kersting, A. (2021). Pre-loss grief and preparedness for death among caregivers of terminally ill cancer patients: A systematic review. Social Science & Medicine, 284, 114240.
- Sun, D., Mao, Z., Zhang, X., Li, J., & Zhang, L. (2022). Relationship Between Post-traumatic Stress Symptoms and Anticipatory Grief in Family Caregivers of Patients With Advanced Lung Cancer: The Mediation Role of Illness Uncertainty. Frontiers in Psychiatry, 13.
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Author
Marcela Guadalupe Cerecedo Martínez. An eighth-semester student in the Bachelor’s degree in Clinical and Health Psychology at Tecnológico de Monterrey. She is currently completing clinical rotations at the National Institute of Medical Sciences and Nutrition Salvador Zubirán (INCMNSZ), where she collaborates on research projects focused on pre-loss grief and caregivers’ emotional health.
This article was reviewed and advised by Sofía Sánchez Román, a research professor of Clinical Psychology at Tecnológico de Monterrey and head of the Psychology Department at the National Institute of Medical Sciences and Nutrition Salvador Zubirán (INCMNSZ). She is a member of the National System of Researchers and conducts research in clinical and health psychology, while developing a new line of research on grief at the Mexico City campus.
