When your loved one is living with dementia, it can change so much – from their daily routine to their needs and behavior. As their condition progresses, it might start to feel like you hardly recognize your loved one anymore, like they’re fading away before your eyes.

It’s a common experience among caregivers – especially those caring for a spouse or a parent – and it’s a deeply painful one. It’s called ambiguous loss, a unique form of grief that we might not always be aware of or prepared for.

We understand how difficult this is. Together, we’ll go through what exactly ambiguous loss is, how it’s different from the grief we feel with physical absence, and ways to care for yourself during this time.

Understanding ambiguous loss

This term was first used in the 1970s by educator and researcher Dr. Pauline Boss. She was studying the families of soldiers who went missing in action and came up with the phrase ‘ambiguous loss’ to describe the complicated grief of a loss without closure or clear understanding.

Dr. Boss describes the 2 types of ambiguous loss as physical and psychological:

Physical loss 

This is when the person is physically absent but psychologically present. It’s common in military deployment, when a person is incarcerated, or when someone goes missing in a natural disaster. They’re not physically present, but you still might hold out hope that they’ll return (also known as ‘frozen grief’).

Psychological loss 

This is the opposite of a physical loss – a psychological absence, but a physical presence. Caregivers of loved ones who are diagnosed with dementia, Alzheimer’s disease, severe mental illness, or a traumatic brain injury often experience this particular type of loss. The person is physically there, but cognitively or emotionally absent.

Why ambiguous loss is so difficult to deal with

When someone dies, even if it’s sudden, our brains can eventually understand and accept it. Rituals for a physical death, like holding a wake or memorial service, and a general recognition of the ‘traditional’ grief process, help us get closure.

But when it comes to ambiguous loss, your ‘lost’ loved one is still physically alive and sitting right in front of you – but their psychological presence is missing. 

As dementia progresses, what makes them them – their personality, memories, or sense of self – slowly starts to fade. You might feel the gap widening between you as they drift further away from the person you knew. 

And because ambiguous loss doesn’t fit neatly into the traditional grieving process, it can be difficult for you and others to understand it. It’s important to remember that while this form of grief can be confusing, it’s a very real experience, and not uncommon for caregivers and family members of people living with dementia.

Coping with ambiguous loss

While there isn’t a straightforward ‘fix’ for what you’re going through, there are ways you can look after yourself to handle this unique situation as best you can. We’ll share some effective ways to process your feelings as you move through this difficult time.

Name what you’re feeling

Maybe you’d never heard of ‘ambiguous loss’ before today, and now something has clicked. Identifying your feelings can help you make sense of them. 

‘Both/and’ thinking can be helpful here. This approach allows you to acknowledge that you can feel 2 things at once. It might sound like, “They’re both here and also gone” or “I’m my father’s child and I’m now a parent to him.” This mindset can give you the space to hold conflicting feelings without judgment.

Move towards acceptance

Losing your family member or spouse to dementia is a significant loss, even if they’re still physically present. Like with any loss, coming to terms with the uncertainty of the situation is part of the process. But be patient with yourself. It might take time, and that’s completely normal. 

Find a way to honor the loss

While there may not be a traditional ceremony or ritual for ambiguous loss, creating your own can offer you the sense of closure you’ve been missing. This is a way to acknowledge your grief at this stage without having to wait for the next one. Whether it’s making a playlist of their favorite songs, taking a walk somewhere that’s special to you both, or planting a tree in their name, honor your loss in a way that feels right for you. 

Join a cause

Joining an organization or cause that’s close to you or your loved one’s heart can give you a sense of purpose, direction, and connection. The Alzheimer’s Association is a great place to start and has chapters across the country, with 5 in Virginia alone. Donate or get involved with one of their many fundraising events to support others who are going through similar situations.

Seek support

The heartache that comes with ambiguous loss – the pain of a missing person who’s still here – is hard to explain and even harder to carry by yourself. Don’t be afraid to reach out to trusted friends or family members and open up about how you’re feeling.

If you need some extra support, a therapist can help you process your emotions and give you coping strategies to support your mental health.

Not sure where to turn? We’re here to help

We know how emotionally complex ambiguous loss can be. Coping with losing your loved one in this way makes an already difficult situation even more painful.

We offer more than memory care; we’re a supportive community of people who have been in your shoes, providing consistent, compassionate care in a place that feels just like home.

Our care team recognizes the emotional weight you’re carrying and is ready to meet you where you are.

Get in touch today to see how we can be there for you and your family.