The Weight of Grief and Stress in Dementia Caregiving

Maria used to call her mother every Sunday. Their conversations were full of shared memories, stories about Maria’s childhood, inside jokes, and updates about the grandkids. But lately, those calls feel different. Her mother struggles to remember details, loses track of the conversation, and sometimes, doesn’t recognize Maria’s voice at all.

People tell her, “At least she’s still here.”  But Maria knows better. She is grieving a loss that no one else seems to acknowledge.

Caring for a loved one with dementia is like living in a house where the furniture keeps rearranging itself. Just when you think you’ve found your footing, something shifts, memories fade, personalities change, familiar routines unravel.

This isn’t just "caregiver stress", it’s something deeper. Researchers call it dementia grief, and it’s not the same as grieving after someone passes. It's the grief of feeling your own joys, passions, friendships, time, energy, and health reduced, if support is unavailable. And, it's the grief of watching someone disappear in slow motion while still being responsible for their care.

One study found that up to 71% of dementia caregivers experience grief related to dementia caregiving (Rupp et al., 2023).

But here’s the problem: most people don’t recognize dementia grief for what it is. 

A recent study found that when caregivers seek help, they’re often met with advice about stress management, rather than acknowledgment of their grief (Rupp et al., 2024).

Why? Because dementia grief doesn’t fit into the standard framework of loss. There’s no final goodbye, no funeral, no closure. It’s ambiguous, relentless, and often invisible to the outside world.

That grief doesn’t just weigh on your heart; it affects well-being.

A study from Greece found that caregivers who spend more time with their loved one tend to experience more severe burnout (Argyropoulos et al., 2023). The emotional exhaustion builds up, affecting mental health, relationships, and even physical well-being. And yet, many caregivers feel like they have to push through it alone.

What Can You Do?

If you’re experiencing dementia grief, you don’t have to wait until you’re completely overwhelmed to seek support. Research suggests that caregivers who address their grief early on experience lower levels of depression and burnout (Rupp et al., 2023).

🔹 Acknowledge Your Grief – You are not "just stressed." You are overwhelmed and you may be grieving. It’s okay to name that loss and find ways to put words to the complicated experience of caring for an elder.

🔹 Talk About It – If your friends and family don’t understand, find a caregiver support group or a therapist who does.

🔹 Take Breaks Without Guilt – Respite isn’t selfish, it’s necessary. Even if it’s just 10 minutes to breathe.

🔹 Listen to Your Body – Grief is emotional and it’s physical. That tightness in your chest, the constant exhaustion? That’s your body carrying the weight of it all.

This is where a body-oriented psychotherapy, such as Sensorimotor Psychotherapy (SP), can be a game-changer. Instead of just talking about emotions, SP helps you recognize how grief is stored in your body, the tension in your shoulders, the shallow breathing, the way your stomach drops when your loved one forgets your name. By tuning into these physical sensations, you can start to process the grief in a way that words alone can’t reach.

Caregivers often get told to "take a break," but let’s be honest, breaks are a luxury not everyone can afford. What’s more realistic is learning how to regulate stress in the moment. SP also teaches simple techniques, like tailored grounding exercises and breath work, that help you stay present instead of getting lost in the overwhelm.

Dementia caregiving isn’t something you can white-knuckle your way through long-term (and some of you are saying, 'but, I have been'). If you’re in the thick of it, finding ways to support your own emotional health isn’t selfish, it’s survival ...and then thriving.

Dementia Caregiving Support

UPDATED: Eudaimonic Wellbeing in Caregiving (for Caregivers of PLwD) - Small 4-Week Groups. Contact for more information.

In the meantime, consider that even a 1% change - a pause and breath, can make a difference.

And the more you self-compassionately acknowledge the strain, and pause to take care of your nervous system, the more capacity you have to be present, even in the hardest moments.

#dementia #dementiagrief #caregiving

Argyropoulos, K., Antzoulatos, P., Argyropoulou, A., Avramidis, D., Gourzis, P., & Jelastopulu, E. (2023). Caregiver burden and its associated factors among family caregivers of persons with dementia in Athens, Greece: A cross-sectional study. European Psychiatry, 64(S983). https://doi.org/10.1192/j.eurpsy.2023.2090

Rupp, L., Abele, C., & Haberstroh, J. (2024). Do mental health professionals recognize dementia grief? GeroPsych: The Journal of Gerontopsychology and Geriatric Psychiatry. Advance online publication. https://dx.doi.org/10.1024/1662-9647/a000340

Rupp, L., Seidel, K., Penger, S., & Haberstroh, J. (2023). Reducing dementia grief through psychosocial interventions: A systematic review. European Psychologist, 28(2), 83–94. https://doi.org/10.1027/1016-9040/a000501

Sensorimotor Psychotherapy Institute. (n.d.). What is Sensorimotor Psychotherapy? Sensorimotor Psychotherapy Institute. Retrieved from https://www.sensorimotorpsychotherapy.org