What if someone remembers your conversation from yesterday, knows when their next appointment is, and can tell you all about their weekend, but something about their behavior feels different?
Maybe they’re spending money in ways they never would have before. They’re saying things that seem out of character. Or someone who was always busy and motivated now needs help getting started.
Would dementia even cross your mind?
For most of us, probably not. We’d think about stress, depression, relationship problems, or a difficult season of life. Sometimes those explanations are right. But when changes keep happening and begin affecting everyday life, they deserve a closer look, even when memory seems fine.
A mother’s story that stayed with me
At a conference, I heard a mother describe her son’s experience with frontotemporal dementia, or FTD. He was in his late thirties and worked in construction.
Before his diagnosis, he’d become more short-tempered and had been having outbursts. There were other things happening in his life, so the family thought it might be stress. That was an understandable explanation for what they were seeing.
Then something serious happened at work. He drove a large piece of equipment through a grocery store parking lot and damaged a line of cars. Initially, they wondered whether he had a brain tumor or was experiencing a psychiatric crisis. He was later diagnosed with FTD.
I don’t know every detail of his evaluation, and one incident cannot tell us whether someone has dementia. But his mother’s story stayed with me because it showed how confusing the early changes can be.
When we hear a story after a diagnosis, the pieces may seem connected. For the family living through it, those pieces arrive one at a time, without an explanation.
What is frontotemporal dementia?
Frontotemporal dementia refers to a group of disorders that affect areas in the front and sides of the brain. These areas help with judgment, behavior, emotional responses, and language.
FTD often begins younger than people expect dementia to begin. And memory loss may not be the first or most noticeable change.
That matters because a family may be looking for forgetting while the changes they’re seeing involve how someone acts, communicates, or manages daily responsibilities.
FTD also looks different from one person to another. Some people first experience changes in behavior and personality. For others, language becomes more difficult.
When changes feel personal
With behavioral variant FTD, changes can involve judgment, impulse control, motivation, and the ability to recognize or respond to other people’s feelings.
Inside a relationship, those changes can be painful.
Imagine that your partner has always been careful with money. You’ve talked through purchases together and made decisions based on what your household can afford. Then unfamiliar purchases begin showing up, and your partner doesn’t seem concerned about the cost.
You’re probably going to ask what happened. You may remind them of your budget or wonder why they didn’t talk with you first.
Without knowing that brain changes are involved, it makes sense that you would understand this as a relationship problem.
The same can happen when someone responds differently to your feelings. You share something upsetting, but the concern you’ve come to expect isn’t there. You may find yourself thinking, “Why don’t you seem to care?”
Understanding that FTD can affect these abilities may help explain what’s happening. It doesn’t automatically take away the hurt. You can understand the diagnosis and still need support with what you’re experiencing.
Remembering and following through are different abilities
One confusing part of FTD is that someone may remember a conversation but still struggle to act on it.
Through the Wheel of Function Framework™, I encourage families to look at the abilities involved in an everyday task.
Making a purchase, for example, asks more of the brain than remembering how to use an app. It also involves pausing, considering the cost, weighing consequences, and connecting that decision to other responsibilities.
Someone may still know how to place an order while having difficulty with those other parts.
That helps explain why repeating an agreement may not solve the problem. The person may need practical support around the decision itself. Financial safeguards, driving concerns, and work safety should be discussed with the appropriate professionals, with respect for the person’s rights and participation.
When language changes come first
Some families first notice trouble communicating. You may hear the term primary progressive aphasia, or PPA, which describes language becoming more difficult over time. Some forms are associated with FTD, while others are more often associated with Alzheimer’s disease.
A person may struggle to put sentences together or understand familiar words. Conversations can take more time and effort for everyone involved.
You may want to help by guessing words or finishing sentences. Sometimes that helps; sometimes it adds to the frustration.
Try giving the conversation a little more room. Share one thought, then wait before adding another question.
Depending on the person’s abilities, pointing, pictures, or written choices may help. A speech-language pathologist can offer guidance specific to the changes they’re experiencing.
Keep making space for the person to participate. They still need opportunities to share opinions, make choices, and be included.
What should you bring up with a doctor?
A shorter temper, a poor decision, or occasional difficulty finding a word does not mean someone has FTD. Many conditions can cause changes in behavior or communication, and a careful evaluation is needed.
A useful question is:
“Is this a change from how this person usually functions?”
If you’re concerned, write down a few examples. Include roughly when the changes began, whether they’re becoming more frequent, and how they’re affecting daily life.
Instead of only saying, “Something is different,” you might explain:
- “He’s always managed our bills, but several have gone unpaid, and these purchases are unusual for him.”
- “She’s having trouble completing work tasks she used to handle easily.”
- “We’ve noticed these changes over several months, and they’re happening more often.”
You don’t have to arrive with a diagnosis. Your observations can help the clinician understand changes that may not be obvious during an office visit.
My free doctor visit preparation guide gives you a place to gather those observations and questions.
Sudden changes are different. Abrupt confusion, trouble speaking, or a sudden change in behavior or alertness needs prompt medical attention. Don’t assume it’s dementia or wait for a routine appointment.
You were working with what you knew
If someone in your family has already been diagnosed, you may be looking back at earlier moments differently.
Maybe you thought it was stress. Maybe there were arguments you now understand in a new way. Perhaps you wish you’d recognized the changes sooner.
You didn’t have today’s information then. You were trying to understand what was happening while keeping up with the rest of your life.
And if you’re still looking for answers, you can keep asking questions. “I’m still concerned. Does what we’re seeing fit the explanation we have, or should we look further?” is a reasonable place to begin.
For support specific to FTD, visit the Association for Frontotemporal Degeneration. Finding people who understand your family’s experience can give you somewhere to bring both the practical questions and the feelings that come with them.
In this week’s episode of Navigating Dementia, we spend more time with these early changes, how they can affect relationships, and what it means to look beyond memory.
Listen to Episode 13: Frontotemporal Dementia (FTD): Early Signs and Behavior Changes wherever you get your podcasts, or watch on YouTube.
What’s a change you wish someone would help you understand? You’re welcome to share a general question in the comments, without including private details about the person you care for.
Learn more
Notes
- Association for Frontotemporal Degeneration. (n.d.). Behavioral variant FTD. https://www.theaftd.org/what-is-ftd/behavioral-variant-ftd-bvftd/
- National Institute on Aging. (2025, January 22). Frontotemporal disorders: Causes, symptoms, and diagnosis. https://www.nia.nih.gov/health/frontotemporal-disorders/what-are-frontotemporal-disorders-causes-symptoms-and-treatment
Want to keep figuring this out together?
Subscribe to Finding Our Way in Dementia Care and get honest stories, helpful tips, and gentle support delivered to your inbox every week. Just real talk, grounded care, and space to breathe.
Subscribe to Finding Our Way in Dementia Care and get honest stories, helpful tips, and gentle support delivered to your inbox every week. Just real talk, grounded care, and space to breathe.
Kind truth. Clear steps. Warm guide.
ABOUT THE AUTHOR
Carlyn Lenfestey, PT, MPT, CDP, CADDCT, is a licensed physical therapist with 25 years of clinical experience and 15 years specializing in dementia care. She is the founder of A Better Way: Dementia Care Solutions, LLC, the creator of the Wheel of Function Framework™, and the host of the podcast, Navigating Dementia.
DISCLAIMER
The information provided in this blog is for educational purposes only and should not be considered medical advice. Always consult with a doctor or a licensed physical therapist before starting any new exercise routine, using assistive devices, or following the recommendations mentioned. Every individual's needs are different, and professional guidance is essential to ensure safety and appropriateness of care.
0 Comments