Why Guilt Is So Common in Dementia Caregiving
- Jan 26
- 3 min read
Guilt and the Dementia Caregiving Journey
Guilt is one of the most common emotions caregivers experience.
When caregivers are unable to release guilt, it becomes a heavy duty—one that quietly drains the emotional and physical energy required for the everyday work of caregiving. Over time, this burden can make an already difficult journey feel unbearable.
Recently, a caregiver asked me whether a traumatic experience their spouse endured many years ago—one connected to a mistake the caregiver believed they had made—could have caused their loved one’s dementia. The pain in that question was profound. This person had been carrying the belief that they were responsible for their spouse’s illness.
I was grateful to be able to say, clearly and definitively: No. That experience did not cause their loved one’s dementia.
But the fact that this question arose at all speaks to how deeply guilt embeds itself in the caregiving experience.
The Many Faces of Caregiver Guilt
Guilt rarely takes a single form.
I work with caregivers who feel guilty that they are not doing enough, not doing things correctly, or not being patient enough. Others feel guilty for encouraging independence while simultaneously worrying about safety. Some carry guilt for giving too much freedom, and others for taking it away.
Driving is a common flashpoint. Caregivers worry about the guilt they would feel if something happened while their loved one was still driving—while at the same time feeling guilty for thinking about revoking a driver’s license or taking away car keys. There is no emotionally neutral position.
Caregivers also experience guilt around wanting time away, needing rest, or desiring moments of joy—especially when their loved one may no longer remember their name, their shared history, or even the nature of their relationship. These feelings are deeply human, yet many caregivers judge themselves harshly for having them.
This journey is emotionally heavy, nuanced, and complex.
Guilt Is Powerful—and Persistent
Guilt is one of the most powerful emotional companions on the dementia caregiving journey. It attaches itself easily and loosens its grip slowly.
Several years ago, during my divorce, someone told me something that stayed with me: the only way out is through.
At that time, I experienced sorrow, grief, loss, rage, resentment, anger, betrayal, sadness, loneliness, and abandonment. While the circumstances were different, the emotional landscape is not unlike what I witness in caregivers every day.
What helped me move forward was not avoidance or suppression. It was time. Acknowledgment. Allowing myself to experience the emotions rather than fighting them. Talking with trusted friends and a therapist. Slowly forming a new relationship—with myself, and later with my husband. Learning to live again in a way that felt authentic to me, not dictated by societal expectations or the needs of others.
Caregivers deserve the same permission.
When Other People’s Choices Create New Guilt
Recently, a caregiver shared a conversation that left them feeling unsettled. Another person caring for a loved one with dementia stated that they could never place their parent in a care community, because they had promised they would not.
That statement added a layer of guilt to the caregiver I was supporting—who was caring for a spouse and already navigating complex decisions.
Other people’s choices, capacities, and circumstances are their own. Every caregiver must evaluate their own values, limits, resources, and realities. Decisions must be made from that perspective alone.
Outside opinions should be set aside unless they are supportive, understanding, and kind.
Dementia caregiving often exposes caregivers to an unnecessary volume of judgment and comparison. Not all voices deserve space.
Keep your room small. Make sure the people in it are safe.
Moving Forward with Compassion
Guilt does not disappear simply because it is irrational or unhelpful. It must be acknowledged before it can soften.
If you are carrying guilt, know that you are not alone. Your feelings do not mean you are failing. More often, they are evidence of love, responsibility, and the weight of impossible decisions.
With emotion, the only way out is through—but you do not have to walk that path unsupported.
If this resonates and you are carrying guilt that feels heavy or confusing, support is available. You can learn more about working with me or my caregiver education at BetterDementia.com.
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Amy Shaw, PA
Founder, Better Dementia™
