What is ambiguous loss?
"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."
—A caregiver in Toronto
The issue of loss and grief is one of the most significant issues when supporting people with dementia and their caregivers. Losses and grieving occur in different ways at all stages in the dementia caregiving journey.
People with dementia are likely to experience feelings of loss and grief over their diagnosis and throughout the progression of disease, as their own abilities gradually change.
Family caregivers also experience and grieve the loss of their dreams and expected plans for the future, the loss of a confidant and a partner, the loss of shared roles and responsibilities, and the progressive losses in the life of the person with dementia. The ambiguous loss and grief that a caregiver may experience can make the caregiving experience even harder.
Ambiguous loss is different from the loss and grief of death because closure is not possible and your grief cannot be fully resolved while the person with dementia is alive. But this ambiguity and the mixed feelings that it can stir up are a common and expected experience for caregivers of people with dementia. Fortunately, understanding loss and grief can help to ease the effects of the disease.
More information and resources
- Download our brochure Ambiguous loss and grief in dementia: A resource for individuals and families.
- If you're a health-care provider, or work or volunteer with an organization that focuses on dementia, there is a version of this brochure for you: Ambiguous loss and grief in dementia: A resource for health-care providers.
- You can also watch this webinar on ambiguous grief and loss presented by BrainXchange.
- Use our checklist to help you live positively with ambiguous loss and grief.