Recognizing and Responding to Anticipatory Grief and Ambiguous Loss

From the moment a potential loss is recognized, it is natural for individuals, families, and even healthcare providers to begin grieving.

When grief begins before a loss has occurred, it is known as anticipatory grief.

Awareness that a loss may be coming does not mean a person feels prepared when it happens, and grieving in advance does not make grief after a loss easier.

I knew without a doubt that Dan was dying. But even when he did die…it’s just so shocking that someone that I had lived half my life with was gone.

Darin Jensen / Bereaved Spouse

Anticipatory grief often overlaps with ambiguous loss, which can occur in situations where a loss feels unresolved or lacks closure such as when someone is physically absent but psychologically present (e.g., missing person, divorce) or physically present but psychologically absent (e.g., dementia, addiction, brain injury).

Ambiguous loss can also occur when missing meaningful milestones or having unmet expectations along the grief journey. Grieving without a clear loss event can make the experience harder to name or explain.

Neurological and Cognitive Conditions

Dementia (e.g., Alzheimer’s disease) - The person may be physically present but psychologically absent in meaningful ways.
Brain Injury - Significant changes in cognition, behavior, or independence can create a sense of loss for both the individual and their support people.
Stroke with Cognitive or Personality Changes - When strokes result in aphasia, executive dysfunction, or mood changes, family members may grieve the loss of familiar communication, roles, or relational dynamics.

Mental Health and Substance Use

Mental Illness (e.g., Schizophrenia, Bipolar Disorder, Severe Depression) - During periods of crisis or instability, loved ones may experience repeated losses of connection, predictability, or shared reality.
Substance Use Disorder (SUD) - Care partners and close connections often experience a rollercoaster of presence and absence.
Eating Disorders - Family members or other care partners may experience ongoing loss when a person's identity, personality, or physical appearance changes drastically due to illness.

Medical and Developmental Conditions

Prolonged Disorders of Consciousness (e.g., coma, vegetative state) - The person’s body remains present while awareness may be severely or permanently impaired, often without a clear or predictable outcome.
Progressive Neuromuscular Conditions (e.g., ALS, MS) - Changes in physical function over time may bring grief related to anticipated losses in independence, roles, and identity.
Prematurity and Complex Neonatal Conditions - Parents may grieve the loss of a typical pregnancy, birth experience, or early bonding experience while facing uncertainty about their child’s health and development.
Developmental Disabilities (e.g., autism, intellectual disability) - Some caregivers may grieve altered expectations or imagined futures, particularly following a diagnosis.

Relational and Situational Losses

Parental Estrangement or Loss of Custody - Parents may grieve the loss of a living child they no longer have access to due to court decisions or family conflict.
Medical Care Transitions (e.g., moving to long-term care, hospice) - Patients and families may grieve the loss of independence or identity during care transitions, even while the person remains alive.
Incarceration or Detainment - Families often face social stigma and emotional pain related to separation, loss of shared routines, and uncertainty about the future

Acknowledging these experiences and using grief-sensitive language can help individuals feel understood and supported.

Permission to Grieve

Because grief is often associated with death, patients and families may not recognize that what they are experiencing is grief when a loss is ongoing, uncertain, or non-death related. Validation and permission to grieve can be especially meaningful, especially when offered by a healthcare professional.

Putting it into Practice: Naming Anticipatory Grief and Ambiguous Loss

When losses are ongoing or unclear, naming the grief can be deeply validating.

Scenario: A family member of a patient with dementia expresses confusion about their emotions as they witness ongoing changes in memory, personality, and connection.
- Grief-sensitive language: "Grief isn't limited to death. It makes sense to grieve what is changing, even though your person is still alive."
Scenario: A patient struggles with sadness and anxiety as their cancer treatment continues but the future feels increasingly uncertain.
- Grief-sensitive language: “This isn’t the future you were imagining. It’s understandable to grieve both what you’re facing now and the loss of what you had hoped for.”
Scenario: A parent expresses sadness about their child’s premature birth and concern about what this may mean for their child’s development over time.
- Grief-sensitive language: “It’s possible to feel grateful for your child and sadness or frustration that their birth didn't happen the way you had envisioned. Holding grief, anxiety, and hope at the same time is very common when there is so much uncertainty.”

Recognizing Anticipatory Grief

Anticipatory grief may show up in different ways.

Patients, families, and other care partners may express sadness about future milestones that may not happen, worry about how life will change, or show increased anxiety, irritability, or withdrawal. Some may focus on practical planning or ask repeated questions about what to expect.

In this video, Dr. Elizabeth Peacock-Chambers shares a clinical moment that illustrates how anticipatory grief can emerge when patients or families begin imagining how the future may change after an unexpected diagnosis.

Healthcare professionals can help by noticing these signals and naming the experience when appropriate.

Grief-sensitive language:

“I’m noticing you seem to be thinking a lot about what the future may look like. Sometimes when people are facing situations like this, they begin grieving changes or losses that may happen ahead of time. This is called anticipatory grief, and it’s a very common and valid response.”

Naming anticipatory grief can help normalize these reactions, provide context for the person’s experience, and reduce self-judgment.

Anticipatory Grief in Healthcare Professionals

Healthcare professionals are not immune to these experiences. Providers may experience anticipatory grief for a patient as goals of care shift or decline becomes more visible. Reflecting on these reactions can help providers attend to their own well-being while continuing to offer compassionate care.

Anticipatory grief and ambiguous loss are real and valid forms of grief and can be just as painful as grief after a death or other tangible loss.

Recognizing and naming anticipatory grief and ambiguous loss can help patients, supporters, and healthcare professionals better understand these experiences and feel more supported as they navigate ongoing loss.

Grief-Sensitive Communication: Patients, Families, and Care Partners