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When someone you love is living with dementia, grief often begins long before their passing. This type of grief — known as ambiguous loss — is one of the most painful and complex experiences a caregiver can face. It’s the feeling of losing someone who is still physically present, of saying goodbye again and again as memory, identity, and connection slowly fade.
What Is Ambiguous Loss?
The term ambiguous loss was first coined by Dr. Pauline Boss to describe the uncertainty and confusion that comes when loss has no clear ending. In dementia, this occurs when a loved one’s personality and abilities begin to change, yet their physical presence remains. Families may find themselves caught between hope and heartbreak — mourning what’s been lost while still caring for the person before them.
It’s an invisible grief that can be hard for others to understand. Friends might say, “At least you still have them,” but for many caregivers, it doesn’t feel that simple. You’re still visiting, still holding their hand, but the conversations, laughter, and shared memories that once defined your relationship may no longer be there.
“Losing Someone Twice”
Many describe dementia as “losing someone twice.” The first loss comes as the disease takes away the person you knew — their humor, independence, and recognition of who you are. The second comes when they physically pass away.
Each stage of dementia can bring its own form of mourning. You might grieve when your loved one stops remembering your name, or when they can no longer enjoy the hobbies you once shared. These moments are small goodbyes that accumulate over time, leaving caregivers emotionally exhausted and unsure how to move forward.
Lessons from The Unexpected Journey
Emma Heming Willis’s The Unexpected Journey charts her journey as a care partner to her husband, Bruce Willis, after his diagnosis of frontotemporal dementia (FTD).
Her writing makes palpable how grief starts long before the final goodbye:
“This is the path I never planned to walk, but it is ours,” she reflects, acknowledging how the dreams they once held shifted the moment the diagnosis arrived.
Emma describes how in the early days she felt “frozen with fear, confusion, and a sense that my world had just fallen apart.” These lines reflect the onset of ambiguous loss — a grieving of the life she expected even while she continued to hold on to her husband.
In interviews and podcasts, she further names the “hidden grief” of dementia: the heartbreak over lost conversations, changes in personality, and small ruptures of connection.
Emma also acknowledges the dual nature of the loss: she must reconcile the heartbreak of what’s been lost with the need to love, advocate, and find meaning in the life still unfolding. The Unexpected Journey weaves research, expert guidance, and personal narrative to help caregivers name and navigate that tension.
Finding Meaning Amid the Loss
While ambiguous loss has no easy resolution, there are ways to find comfort and strength along the way:
- Acknowledge your grief. Allow yourself to mourn the changes, even when others may not understand.
- Seek connection. Support groups, faith communities, and counseling can provide a safe place to share your feelings.
- Honor the person they were — and are. Celebrate small moments of joy, recognition, or peace. These moments matter.
- Practice self-compassion. Caring for someone with dementia is emotionally draining. Remember that your grief is valid, and so is your need for rest and renewal.
Holding On While Letting Go
Ambiguous loss teaches us that love can exist even in the face of profound change. Though dementia may take away memories, it cannot erase the bond formed over a lifetime. As Dale and Juanita Lund so beautifully expressed in The Unexpected Journey, “Love remains — even when words and memories fade.”
By understanding ambiguous loss, we can begin to offer caregivers and families the compassion they deserve: to sit with them in the uncertainty, to acknowledge the pain of “losing someone twice,” and to remind them they are not alone on this unexpected journey.