DOCTOR NOTES / FAMILY GUIDES3 min read · Educational resource

FTD Guide · Chapter I

You’re not the first family to walk this road.

A plain-language guide to FTD, written with families who’ve already walked it. Read one chapter tonight. Skip to what you need.

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Understanding Dementia, Alzheimer’s, and FTD

Before we talk about FTD specifically, it helps to understand the bigger picture.

Dementia is not a single disease. It’s a general term for a group of symptoms that affect memory, thinking, and behavior enough to get in the way of daily life. Think of “dementia” like “cancer” — it’s a broad category, not one specific thing. There are many types.

Alzheimer’s disease is the most common type of dementia. It makes up about 60–70% of all dementia cases. Alzheimer’s mainly attacks memory first. People forget recent conversations, misplace things, and struggle to learn new information. It typically shows up after age 65 and gets worse slowly over time. Most people have heard of Alzheimer’s. Many assume that all dementia is Alzheimer’s. It’s not.

Frontotemporal dementia (FTD) is a different type of dementia. It affects a different part of the brain and causes different symptoms. Where Alzheimer’s starts with memory, FTD usually starts with changes in personality, behavior, or language. And it tends to hit much younger — often in the late 40s to early 60s.

Why do Alzheimer’s and dementia get confused? Because most people (and many doctors) think “dementia = memory loss = Alzheimer’s.”

A common example: a person in their 50s starts acting “differently.” Behaviors can vary widely, from making impulsive decisions, to losing empathy, to saying inappropriate things, to overstepping boundaries that they never would have crossed before. But because these changes don’t include memory loss, they don’t fit what most people think dementia looks like. So instead of being recognized as a brain disease, it gets called depression, a midlife crisis, bipolar disorder, or a personality problem. Unfortunately, it often takes years for individuals and families to get the correct diagnosis, which causes years of unnecessary suffering, conflict, and often the breaking apart of families.

Why the difference matters: Alzheimer’s and FTD require different approaches. Some medications that help with Alzheimer’s can actually make FTD worse. The caregiving challenges are different. The progression is different. Knowing which type of dementia you’re dealing with changes everything about how you plan and what kind of help to look for.