Written by Janie Martin, dementia educator
Note: At ForgeWorks, we use the term “brain change” instead of dementia to reduce stigma and misunderstanding, focusing on what is happening in the brain without allowing a diagnosis to define the person. Like other health conditions, it names symptoms and changes — not someone’s value, abilities, or identity.
In addition, we use the term “care partner” in place of “caregiver” to emphasize the partnership between a person living with a brain change and the individual providing care. This language recognizes shared humanity, mutual relationship and preserves the dignity and identity of both people involved.
So how do we promote understanding and offer support in ways that truly make an impact?
You’ve probably heard the saying, “April showers bring May flowers.” While a rose and a daisy are both flowers, they look very different—yet they still fall into the same category. This is much like the term dementia, or, as I prefer, brain changes.
There are many different types of brain changes. How and where those changes occur in the brain affects how individuals living with brain changes respond, function, and experience the world. Yet the term dementia—or brain changes—applies to all of them.
Let’s pause for a moment and think about a rose. What captures our attention first is its beauty—not the thorns attached to the stem. We can choose to do the same with individuals living with brain changes. When we look first at the person—not the diagnosis—we begin to see their beauty, their humanity, and what they still have to offer and teach us.
I have learned so much from being a care partner to individuals living with brain changes. Some of them have been my greatest teachers, helping me better understand the many forms brain changes can take. Focusing on moments of connection can turn a challenging day into moments of joy and gratitude for what we so often take for granted.
Encouraging open and honest conversations about brain changes helps reduce stigma—both for individuals living with brain changes and for their care partners. The more open we are to understanding these changes—and the supports available along the journey—the more we can reduce fear and isolation.
So, how do we do that?
I have found that facilitating mixed community and support groups for both care partners and individuals living with brain changes helps build bridges. These spaces create opportunities for shared understanding and open perspectives on the journeys each person is experiencing.
Care partners are navigating one aspect of the journey, while individuals living with brain changes experience it from a completely different perspective. Open, honest conversations help bridge that gap and benefit everyone involved.
When individuals living with brain changes openly share how it feels from their perspective, care partners gain insight and are better able to reflect with empathy. As a facilitator, hearing someone living with brain changes express frustration about no longer being able to do things that once came easily or automatically often shifts the entire tone of the group. Empathy deepens. Understanding grows.
No one would choose these diagnoses, and no one is exempt from them. Brain change does not discriminate. It is no respecter of who receives the diagnosis or who does not.
As the daughter of a mother who lived through the end stages of vascular and Alzheimer’s dementia, I learned to embrace each day with gratitude—including the lessons she taught me through her journey with brain changes. Each day truly is a gift, and it is important to cherish it, because tomorrow can change so quickly.
To care partners, I want to stress the importance of not being overly critical of yourselves during moments of frustration or exhaustion. This journey is challenging. Both care partners and individuals living with brain changes can acknowledge that reality. Being real and honest about the experience can open the door to deeper connection, compassion, and unexpected moments of joy.
Ways you can build awareness and support others this month—and every month:
Start by sharing what you’ve learned with someone else. A simple conversation can help shift perceptions, reduce stigma, and open the door to greater understanding.
Look for opportunities to engage—whether attending a local event, joining a conversation, or learning more about brain changes and the experiences of those living with them.
Consider how you might support organizations and initiatives that walk alongside individuals living with brain changes and their care partners. Even small acts of support can make a meaningful difference.
And when you’re able, use your voice. Advocate for better resources, greater understanding, and more compassionate communities where every person is seen, valued, and respected.