Ambiguous Loss with Dementia

couple sitting together outside with Ambiguous Loss from Dementia

What Is Ambiguous Loss?

Ambiguous loss is a sense of loss that has no closure or lacks clarity for why it is happening. This emotion often is experienced “when a loss has no closure,” explains the Cleveland Clinic.

How Is Ambiguous Loss Different from Ordinary Loss?

Ambiguous Loss is a loss that is not connected to a specific moment in time. When a loved one passes away, for example, a memorial or funeral service typically provides closure for those grieving. Ambiguous loss, such as “losing” a loved one whose brain is altered by disease or injury, can result in ongoing grief because the experience lacks a definitive ending. According to the Alzheimer’s Foundation of America, ambiguous loss often occurs “when a family member is physically alive but cognitively changed due to Alzheimer’s disease or another related dementia.”

When Does Ambiguous Loss Occur During the 5 Stages of Grief?

Someone experiencing ambiguous loss may become “stuck” in any one of the five stages of grief with the inability to feel closure and transition into the next stage. This complicates the grieving process, making ambiguous loss “feel like ongoing trauma because there is no answer,” explains Dr. Kia-Rai Prewett, a psychologist with Cleveland Clinic Behavioral Health who specializes in ambiguous loss. 

Why Is Ambiguous Loss Important to Understand in Dementia Care?

You may feel continuous loss as your loved one with dementia continues to change. Those closest to someone with dementia also experience the disease process and face their own grief. As explained by psychologist Dr. Kenneth J. Doka, Professor of Gerontology at the Graduate School of the College of New Rochelle and Senior Consultant to the Hospice Foundation of America, grief “is the constant yet hidden companion” of dementia.

With ambiguous loss, there is often a feeling of melancholy and emptiness without knowing why you’re experiencing these emotions. It can be difficult to know how or when to grieve because your loved one is still present but not in the same way. 

How Do We Support Ourselves When Faced with Ambiguous Loss?

Many times, “ambiguous losses can feel isolating because they can be ignored. This makes it especially difficult for the person experiencing the loss,” says Dr. Prewitt. This isolation can be challenging for a person experiencing ambiguous loss; however, there are ways to support your grieving process, including these tips from the Cleveland Clinic:

  • Self-Reflection: Until you recognize your own ambiguous loss, you cannot recognize ambiguous loss in others. Take some time to think about your experience. 
  • Acceptance: Work toward making peace with your new reality.
  • Find or Create a Community: Volunteer for causes that are related to your ambiguous loss; connect to a support group.
  • Find Power in Knowledge: Community resources are available through Central Baptist Village as well as organizations such as Elderwerks and the Alzheimer’s Association of Illinois.

Personal Testimony

“The word ‘ambiguous’ helped me understand what was going on. I’m still married to my wife. I love her, but I don’t live with her. I’ve always been crazy about her and still am. She’s looked after, but it is a huge loss for me. The ambiguity is exactly how I feel.”
(“Ambiguous Loss and Grief in Dementia,” Alzheimer’s Society)

Helpful Titles

We suggest these titles for further reading:

Loving Someone Who Has Dementia, Dr. Pauline Boss, Jossey-Bass (2011). Dr. Boss coined the term “ambiguous loss” and is a pioneer in the ambiguous loss field.

Being Mortal, Dr. Atul Gawande, Metropolitan (2017). Dr. Gawande is a surgeon, professor, and esteemed public health researcher specializing in endocrinology.