Ambiguous Loss: Grieving Someone With Dementia Who Is Still Alive

If someone you love has dementia, you may already be grieving, even though they are still here. You might feel guilty about that, or confused, or worried that something is wrong with you for mourning a person who is alive. Nothing is wrong with you. There is a name for what you’re feeling, and understanding it can make it easier to carry.

What is ambiguous loss?

Ambiguous loss is grief for a loss that is unclear, incomplete, and without a clear ending. The term was developed in the 1970s by family therapist Pauline Boss, who first used it while working with families of soldiers missing in action. Boss has described it as a loss without closure or a clear understanding: part of the person is with you and part of them is not.

She describes two kinds. In one, a person is physically absent but psychologically present, such as someone missing and still very much in the family’s thoughts. In the other, a person is physically present but psychologically absent. Dementia is the second kind. As Boss writes in a fact sheet for the Family Caregiver Alliance, it’s difficult to care for someone who is here physically but gone mentally and psychologically, and for many caregivers it can feel as though there’s a stranger in the house.

Why does it feel so hard?

Because the usual supports of grief are missing. Boss notes that, unlike a death, there is no closure, no official validation, and sometimes little community or religious support. There is no funeral, no casseroles, no card. Many caregivers also describe the ups and downs: dementia can make a person seem present one moment and gone the next, which Boss calls a roller coaster of absence and presence.

The American Psychological Association reports Boss’s description of this as a kind of “frozen” grief. In her view, with a death, grief is not frozen; with ambiguous loss, you’re stuck. She has also said it can make you feel crazy because it’s so confusing.

The Alzheimer’s Association adds that some people won’t understand your grief, because most people think of grief as something that happens when someone dies.

How is this different from anticipatory grief?

They overlap. Anticipatory grief is grieving ahead of an expected death; see our guide on anticipatory grief. Ambiguous loss is the broader experience of loss without resolution, including the present-tense sense that the person you knew is partly gone. The Alzheimer’s Foundation of America notes that the two are closely related.

What does it do to caregivers?

Boss lists signs of overwhelming stress, including decisions put on hold, tasks piling up, doubt and helplessness, friendships in limbo, more conflict with family, and family gatherings and rituals cancelled or changed. When a caregiver becomes more and more isolated, the risk of depression, anxiety, guilt, shame, neglecting one’s own health, and substance misuse goes up. The Center for Loss and Bereavement notes that studies have found caregivers who experience ambiguous loss report higher levels of depression and anxiety than those who don’t.

What can help?

Boss’s fact sheet offers nine suggestions. In summary:

1. Name it. Call it ambiguous loss. It’s neither your fault nor your loved one’s; it’s caused by an illness
2. Think both/and, not either/or. The person is both here and gone. You are both a caregiver and a person with your own needs. You may both wish it were over and want your loved one to keep living
3. Know your support system. Build predictability about who you can rely on, including a written plan for who does what and when, and regular breaks. See caregiver burnout and respite care
4. Keep rituals, but simplify them. Don’t cancel holidays and celebrations; scale them to fit the situation
5. Revise family roles. Notice what you’re now responsible for, what you’ve lost, and whether others are helping
6. Look at your family’s rules. Question unspoken assumptions, such as that one person must do everything, and move toward teamwork
7. Accept that anger and guilt are normal, but don’t act them out. Talk to a professional or another caregiver. Feeling angry is normal; harming the person or yourself is not
8. Imagine something new to hope for. Plan something small and certain: a dinner with a friend, an outing, a hobby with clear outcomes
9. Check on your own health. Seek professional help if you feel depressed, hopeless, or physically sick, if you feel like hurting yourself or hurting or yelling at the person you care for, if you’re relying on alcohol or drugs, or if you’ve stopped taking care of yourself

Boss’s overall image is walking in the fog: keep moving forward despite not knowing what lies ahead, and reach out for connection to stay resilient.

Should I be trying to “get closure”?

Not necessarily. Boss’s work suggests that seeking closure may not be the right goal for a loss that has none. Instead, many people find it helpful to hold two truths at once, as in the APA’s example of a daughter learning to think about her mother, “She’s here and she’s also gone.” The Alzheimer’s Association says it’s common to feel conflicting emotions, including love and anger at the same time, and that you may go through feelings of loss more than once as dementia progresses.

What about talking to someone?

Boss says peer gatherings like an Alzheimer’s support group can be especially helpful, and suggests adult caregivers bring a sibling, neighbor, or member of their faith community to appointments when they can, given how isolating this kind of loss is. The Alzheimer’s Association runs support groups across the country and a free 24/7 Helpline at 800.272.3900. See our guide on finding grief support.

When should I get urgent help?

If you’re thinking about harming yourself, call or text 988 (the Suicide & Crisis Lifeline in the United States) at any time. If you’re worried you might hurt or lose control with the person you care for, step away safely and call someone, such as a family member, the Alzheimer’s Association Helpline, or your doctor, today.

What happens after the person dies?

Ambiguous loss doesn’t end neatly, and grief after the death often has its own mix of sorrow, relief, and emptiness. See our guides on what to expect as dementia reaches its final stages and on relief, guilt, and grief after a long dementia illness.

For related reading, see what to do when a parent with dementia no longer recognizes you and when someone with dementia is eligible for hospice, and, for the children in the family, talking to children about a grandparent with dementia.

See also How to say goodbye to someone with dementia.

This is general educational information, not medical or mental health advice. If you’re struggling, a doctor, counselor, or the Alzheimer’s Association Helpline (800.272.3900) can help with your specific situation.