The Emotional Burden of Dementia Caregiving – Why Understanding Matters

Sometimes the hardest part of caregiving happens in moments like this—quiet, alone, and full of emotion no one else sees. Every feeling you carry deserves a name.

Recently, I met with an incredible family facing the emotional burden of dementia caregiving.

Like so many caregivers I work with, they were overwhelmed—not just by daily tasks, but by guilt, confusion, and frustration they didn’t know how to navigate.

I am reminded of the way Tolstoy begins Anna Karenina:

"Happy families are all alike; every unhappy family is unhappy in its own way."

So it is with disease. Disease burdens individuals uniquely. Each person's experience is their own.

Yes, there are recognizable patterns: patients with heart or lung disease lose stamina, struggle for breath, and need increasing assistance just to get through the day. They are usually aware of this increasing need. That awareness can lead to depression. Social isolation also plays a role, as it becomes more difficult to leave the house.

But dementia is a disease of a different color.

It brings a slow, progressive loss of the ability to navigate the day on one's own—but without the insight we might expect from someone becoming fully dependent on others.

The real problem arises when caregivers, unaware of what is happening in their loved one’s brain, continue to hold them accountable as if their mind were still fully intact.

In fact, the mistake most caregivers make is treating their loved one as though they have not changed.

So it was with this family.

When I entered the room to meet with them, I could feel the emotional whirlwind.Unspoken feelings become obstacles to understanding.

So, my first job was simple: validation, normalization, and reassurance.

Anything you're feeling—guilt, frustration, anger, rage, resentment, exhaustion, even the fierce desire to give up—is totally and completely normal.

It must be acknowledged before you can begin to heal.

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If you're carrying emotions that you're having a hard time navigating, you're not alone.

Each week on this blog, I’ll share practical ways to help you better understand dementia, support your loved one with confidence, and reduce the guilt and overwhelm so many caregivers experience.

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And if you ever feel like you need more personalized support, I’m here.

Whether you're in the U.S. or abroad, you're not alone—I’m here to help if and when you need it.

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Amy Shaw, PA

Founder, Better Dementia