Caregiver Insights

Understanding Dementia

What You Need to Know

We all know that caregiving is challenging and becomes increasingly difficult as the illness progresses. What we may not fully understand is that we play a huge role in determining how difficult our journey with dementia will be. This DCC website discusses many of the challenges that caregivers face, but there is one issue that affects all others and is important to understand.

As caregivers, we are familiar with short-term memory loss, repetitive questions, and disconnection, but we don’t have an informed sense of what it would feel like to have dementia. I took an eye-opening “virtual dementia tour” developed by Second Wind Dreams that simulates living with dementia. In just a few depressing minutes, the oppressive confusion and isolation changed my perspective on what it must be like to live in a disconnected world. 

We take so much for granted, and we are likely to make assumptions that are misinformed. The behavior of people with dementia is not controlled by the person we have known and loved in the past. Dementia changes their behavior. But the person we have known and loved still survives beyond the dementia barrier with the same values and social needs. We often do not recognize this because the behavior we see and hear obscures it. In many cases, our loved ones feel lost, alone and scared, when all we see is confusion.

Meanwhile, we caregivers are feeling the unrelenting demands, stress, and exhaustion of caregiving. While it is heartbreaking to watch the inevitable decline, we are also troubled by the loss of our personal hopes and expectations. We, too, can feel isolated and depressed. With dementia, there are no winners!

Dementia is a wedge. It tries to drive caregivers and their loved ones apart. It makes love and close relationships harder to preserve. It is a terrible curse with no magic wand solutions. How can we respond?

Our best option is to boost caregiving to a higher level, one that will benefit both caregivers and our loved ones. Recall the happy times when you were together in the past. Now, instead of “taking care of,” focus on “being with.” Become a care companion instead of a caregiver. Caregiving alone is driven by tasks and responsibilities. Care companions are driven by love. We channel our energy into personal connection rather than into tasks. Care companions honor long-standing relationships and provide engagement and emotional attachment. We listen between the lines. Loved ones feel the presence and connection they long for but are unable to communicate. Our goal as care companions is to move beyond safety and comfort to the warmth of personal engagement. 

Being a care companion opens our hearts. It replaces frustration with the knowledge that we are doing the best that we can under the circumstances. This won’t solve all the problems of dementia, but it minimizes feelings of guilt, and it produces satisfaction and fulfillment. Our loved ones are better off, and so are we. Improve your situation as a caregiver by becoming a care companion.

In his book, Into the Magic Shop, brain surgeon James R. Doty endorsed this approach when he concluded: “The heart has an intelligence of its own, and if we learn from it, we will know that we keep what we have only by giving it away. If we want to be happy, we make others happy. If we want love, we have to give love. If we want joy, we need to make others joyful. If we want forgiveness, we have to forgive. If we want peace, we have to create it in the world around us.” Good advice for us all to live by.

Our Mission

Connection, Insight & Relief

To connect dementia caregivers to community, practical insights, and genuine relief — so that no caregiver has to figure this out alone, without a hand to reach for or a voice that understands.

Built by caregivers. For caregivers.

Our Vision

No One Walks Alone

A world where no caregiver walks this road alone — where every family touched by dementia has access to the compassion, knowledge, and community they so deeply deserve.

Because love deserves a community behind it.

Dementia Caregivers Connection isn't a program someone designed from the outside. It is the community Pete and Christine wish had existed when they needed it most — and it grows stronger with every caregiver who joins it.

Built by caregivers, for caregivers. We offer practical insights, compassionate community, and meaningful relief for every family walking the dementia journey — because no one should face it alone.

Join our growing community of caregivers.

© 2026 Dementia Caregivers Connection. All rights reserved.

Made with and for caregivers everywhere