Welcome to the Me with Dementia Talking About… weekly series.

Each Wednesday, I share an excerpt from my book—Me With Dementia Talking About—where I share reflections from the perspective of someone living with dementia. These gentle reflections are designed to help caregivers, family members, friends, and healthcare professionals better understand what dementia may feel like from the inside.

Whether you’re joining us for the first time or have been following along from the beginning, I’m glad you’re here.

Why It’s Called a Brain Disease

“Me” with Dementia, Talking About…

“You might hear people say, ‘Oh, she has memory problems,’ or ‘He’s just getting forgetful.’ But what’s happening to me isn’t just forgetfulness — it’s a brain disease.

Here’s why:

My brain isn’t just a lump of gray mush sitting behind my eyes. It’s an entire city, full of neighborhoods that each have their own jobs.

The frontal lobe helps me plan, make decisions, and behave politely in public.
The temporal lobes store my memories and help me understand language.
The parietal lobe helps me find my way around the world — where my hands are, how to button a shirt, how far away that step is.
The occipital lobe helps me see and make sense of what I’m looking at.
The hippocampus — my little librarian — files new memories where they belong.

When dementia moves in, it doesn’t stay in one room. It’s not just the “memory department” that goes dark. The disease starts breaking down neurons and tangling communication wires all over the city. Lights flicker out here, phone lines die there. Some neighborhoods — like reasoning or language — go quiet long before others.

That’s why I might:

Lose track of time or forget the day.
Struggle to follow directions.
Get confused by what I see or hear.
Say or do something completely out of character.

It’s not because I’m lazy, rude, or choosing to forget. It’s because the damage is physical. Neurons are dying. Brain tissue is shrinking. The highways of information inside my head are full of detours and dead ends.

That’s why dementia is a brain disease — it’s not just in my mind, it’s in my brain. You can actually see the changes on scans: the shrunken areas, the thinning cortex, the scarred pathways where messages used to travel fast and clear.

So when you see me struggling, remember: I’m not doing this on purpose. I’m living in a city where the streetlights keep going out, and I’m still trying to find my way home.

Be patient with me when I forget.

Be gentle when I resist.

Because even if parts of my brain are fading, my heart still remembers what love feels like.”

Continue the Journey

Thank you for reading this week’s chapter from Me with Dementia Talking About…

This series follows the book in order, one chapter each week, making it easy to read from beginning to end.

Continue Reading

📚 View the Complete Series

Frequently Asked Questions

What makes dementia a brain disease?

Dementia is considered a brain disease because it causes physical damage to brain cells and the connections between them. As neurons become damaged or die, different parts of the brain gradually lose the ability to communicate, affecting memory, thinking, language, emotions, behavior, and daily activities.

Is dementia just normal aging?

No. While mild forgetfulness can occur with normal aging, dementia is a progressive brain disease. It causes ongoing damage to brain tissue that eventually interferes with everyday life, independence, and the ability to think, communicate, and function.

Why does dementia affect more than memory?

Different areas of the brain control different abilities, such as language, judgment, movement, vision, emotions, and problem-solving. Because dementia damages multiple regions of the brain over time, symptoms often extend far beyond memory loss.

Can brain scans show dementia?

In many cases, yes. Brain imaging such as MRI or CT scans can reveal physical changes associated with dementia, including brain shrinkage (atrophy), changes in specific brain regions, or other abnormalities that help healthcare providers evaluate the condition.

Why do people with dementia sometimes act differently?

Behavior changes occur because dementia affects the parts of the brain responsible for judgment, impulse control, emotions, reasoning, and social awareness. These behaviors are symptoms of the disease rather than intentional choices, which is why patience and understanding are so important.

What should caregivers remember about dementia?

One of the most important things to remember is that dementia changes the brain—not the person’s worth. Understanding that behaviors are caused by disease rather than choice can help caregivers respond with greater patience, compassion, and empathy.

Why It’s Called a Brain Disease | Me With Dementia Talking About…