Understanding Ambiguous Loss Caused by Dementia

A unique grief

The experience of dementia creates a series of ongoing losses that can feel overwhelming. You watch their personality change, mourning not just who they were but also losing the person who once brought you comfort during your own difficult times. Perhaps most disorienting is the gradual role reversal, as you transform from spouse or adult child into full-time caregiver, altering the relationship that once defined you both.

Traditional grief follows loss—but with dementia, you’re grieving while still caregiving. This creates several unique challenges:

No permission to grieve: Society expects you to be grateful your loved one is alive, making it difficult to acknowledge your very real losses. You may feel guilty for mourning someone who’s still breathing.

Frequent false hope: Good days mixed with bad days can create an emotional rollercoaster.

Caregiving demands: Unlike other forms of grief where you have time and space to process emotions, dementia caregiving requires your constant presence and decision-making, leaving little time to address your own pain.

Social isolation: Friends may drift away because visits become difficult. Others may offer well-meaning but hurtful advice such as “at least they’re still alive.”

Identity confusion: When your relationship fundamentally changes—from wife to caregiver, from son to decision-maker—you may struggle with who you are in this new reality.

Honoring your grief

Your grief is real, valid, and necessary. Psychologists say that to process ambiguous loss, one must first name and acknowledge the problem, and move beyond “either-or” thinking and toward “both-and” thinking. Your spouse is both gone and present. You are both a daughter, and a parental figure to your father. Here are some other ways to process ambiguous grief.

Name what you’ve lost: Be specific about what you’re mourning. Maybe it’s Sunday morning coffee conversations, shared decision-making, or the person who knew your history better than anyone else.

Allow conflicting emotions: It’s normal to feel sad, angry, guilty, and relieved all in the same day. You can love someone deeply while also feeling frustrated by their condition.

Create new rituals: Since traditional grief rituals don’t apply, create your own. Some caregivers write letters to the person their loved one used to be, create memory books, or have quiet moments to acknowledge what they’ve lost.

Remember that caring for your own emotional health isn’t selfish—it’s essential. Your loved one deserves a caregiver who’s getting the support they need, and you deserve to process this profound loss with compassion and understanding. And you are not the first or only person who has been through this journey. Consider joining a support group. You may find solace in sharing your experience with other caregivers who are new to their journey and being in the company of people who understand yours.

Ambiguous loss in dementia is a very challenging experience, but you don’t have to face it alone. Your grief matters, your feelings are valid, and with the right support, you can find ways to honor both what you’ve lost and what remains.