Grief is one of life’s most complex experiences. It does not follow a clear start or finish and affects each person differently. For individuals caring for someone with dementia, grief often begins before death. Watching a loved one slowly fade—losing pieces of memories, communication, and connection—can evoke deep and overwhelming emotions. The continued decline is made more painful by the helplessness of knowing this cannot be stopped. These emotions often mirror the grief felt after loss, even though the person is still physically present.
Symptoms of anticipatory grief
- Depression
- Fatigue
- Guilt
- Increased concern of person dying
- Preparing for life after a loved one is gone
Anticipatory grief is the emotional experience of beginning to mourn a loved one before their death. It often arises when ongoing complications make it clear that nothing can halt the progression of cognitive and physical decline. In dementia, grief is often experienced by caregivers when they notice the person living with dementia becoming more forgetful or struggling with communication. Though grief is a natural process when losing a loved one, anticipatory grief can go on unspoken and hidden from others.
Symptoms related to anticipatory grief are very similar to those of post-death grief. These symptoms may be felt at different times and can vary in severity from person to person. Some of the more common symptoms can be increased concern of a person dying or attending to unfinished business and end-of-life planning with or for your loved one.
Stages of anticipatory grief
The five stages of grief, developed by Elisabeth Kübler-Ross, are often used to understand anticipatory grief, though the process is not linear or sequential. While each stage represents specific emotional responses, grief does not follow a set sequence.
- Denial—In this stage, caregivers may struggle to accept the loss of a loved one’s cognitive and physical abilities. Changes in behavior may be minimized or normalized as a way to avoid the reality of decline.
- Anger—Anger may be directed toward medical professionals, family members, or the dementia diagnosis itself. A normal response is to find a source of blame.
- Bargaining—This stage is characterized by thoughts or statements involving a willingness to do anything to alter the outcome. Common reflections include “if only” scenarios, such as wishing an earlier diagnosis had been made.
- Depression—Intense sadness, overwhelming emotions, withdrawal from others, and difficulty coping with the irreversible nature of dementia often define this stage.
- Acceptance—Acceptance emerges after the full range of emotions has been processed. This stage involves acknowledging the inevitability of death and recognizing that all possible care and support have been provided.