A year after Bruce Willis’ family announced he had aphasia — a condition that makes it hard to speak or understand language due to brain damage — they shared the “Die Hard” actor’s more specific diagnosis: frontotemporal dementia (FTD).

“Dementia” is a general term for diseases that affect thinking, memory, and other brain functions. Alzheimer’s disease is the most well-known type, but there are others, including frontotemporal dementia. FTD usually affects people at a younger age than Alzheimer’s does and often begins with personality changes and language problems instead of memory loss.

When celebrities are diagnosed with dementia, their stories help raise public awareness. For example, learning about Willis’ diagnosis can lead to better understanding and stronger support for people living with FTD and other types of dementia.

Frontotemporal Dementia Affects Behavior and Language

Frontotemporal dementia occurs when neurons (brain cells) die in the frontal and temporal lobes of the brain. The frontal lobe controls functions like decision-making, self-control, social behavior, learning, and voluntary muscle movements. The temporal lobe plays a role in language, emotions, memory, and processing sensory information. While each lobe has specific jobs, the brain works as a connected network — so damage in one area can affect many different abilities.

Researchers have identified three types of FTD:

• Behavioral variant FTD — This is the most common form and causes major changes in personality and behavior. Poor judgment, especially in social situations or when making plans, can also occur.
• Primary progressive aphasia (PPA) — Language problems are the first noticeable symptoms of PPA, which appears to be the type Willis has. People may have trouble speaking, reading, writing, or understanding words.
• FTD-related movement disorders — Rare forms of FTD affect physical movement, causing problems with balance, muscle strength, or controlling certain parts of the body.

FTD is linked to genetics — a family history of FTD is a known risk factor. Researchers are studying other potential causes and risk factors, such as education level and cardiovascular (heart and blood vessel) health.

Frontotemporal Dementia Starts Earlier Than Alzheimer’s

FTD tends to affect people at a younger age than Alzheimer’s disease. FTD usually begins between ages 45 and 64, though it can start earlier or later. In contrast, Alzheimer’s disease is more common in people aged 65 or older.

Although Alzheimer’s disease tends to develop later in life, it’s the most common type of dementia, making up about 60 percent to 80 percent of cases. FTD accounts for 10 percent to 20 percent of all dementia diagnoses.

In FTD, brain cell loss happens mostly in the frontal lobe (directly behind the forehead) and temporal lobes (behind the ears). In Alzheimer’s, damage mainly affects the cerebral cortex (the outer layer of the brain that controls thinking) and areas tied to memory, like the entorhinal cortex and the hippocampus.

Symptoms Can Vary Between the Two Types

Memory loss is the hallmark symptom of Alzheimer’s disease. In contrast, people with FTD are more likely to show changes in behavior or have trouble with language. Symptoms may overlap as the diseases progress. For example, someone with late-stage Alzheimer’s disease may have behavior changes, and someone with advanced FTD may experience memory loss.

Both conditions worsen over time. Some people decline rapidly, while others live with symptoms for 20 years. After diagnosis, people with FTD often live about six to eight years, though this can vary. People with Alzheimer’s live an average of four to eight years after diagnosis, though some live longer.

There’s no cure for any type of dementia, but doctors can prescribe medications to manage symptoms. A correct diagnosis is important, because some Alzheimer’s medications can actually make FTD symptoms worse, especially in those with behavioral variant FTD. Accurate diagnosis also helps people access the right services and may allow them to join research studies testing new treatments.

Frontotemporal Dementia Presents Unique Caregiving Challenges

Caring for someone with FTD can be challenging, exhausting, and emotionally draining. People with FTD may seem to lack empathy, be depressed, or act impulsively. They may lose social awareness, leading to awkward situations. Reasoning with them can be difficult, and caregivers often take on more household responsibilities. Over time, the demands can lead to caregiver burnout.

Members of myALZteam have shared what it’s like to care for someone with FTD:

• “My husband has FTD. He cannot tolerate big sounds and multiple people talking at the same time.”
• “He remembers a lot of stuff, but his judgment, planning ahead, processing words and information, and impulse control are suffering. It’s kind of like living with a teenager.”
• “My husband was diagnosed four years ago and has slowly gotten worse with memory and his balance. He also has lost control of bladder and his bowels. ... He does not talk much anymore.”
• “I’ve started not sharing as much with him because the giggling at inappropriate stuff wears me out. He also repeats most things I say, not necessarily mocking but kinda like he’s thinking through what I’m telling him.”
• “My husband’s FTD with PPA is advancing so quickly. He was outside at 4 a.m. with no bottoms on.”
• “My husband has an uncontrollable laugh in serious situations like a funeral. ... We have asked him to walk away until he can get control of himself. He can, but it takes a bit of mind control and breathing for him.”
• “My husband does not recognize any deficiency, and yes, that makes it extremely hard! He’s just flustered much of the time. Getting help with the yard is very costly, but he just doesn’t see things to be done.”

Tips for Caregivers of Someone With FTD

If you’re a caregiver for someone with FTD, strategies such as these may be helpful:

• Don’t take behaviors personally — Your loved one isn’t trying to upset you on purpose.
• Try not to argue — Logical thinking is often impaired, so arguments can lead to more frustration.
• Speak in short, simple sentences — Give them time to process and respond.
• Communicate using body language, drawings, or photos — Visual cues may be easier to understand than words.

You might also work with a physical or occupational therapist to help with mobility challenges. A speech-language pathologist can support communication needs. Connecting with others who understand what you’re going through can also make a big difference and remind you that you’re not alone.

Talk With Others Who Understand

On myALZteam, the social network for people with Alzheimer’s and other forms of dementia and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with dementia.

When did your loved one get diagnosed with frontotemporal dementia? What caregiving strategies have made your day-to-day life easier? Share your experience in the comments below, start a conversation by posting on your Activities page, or connect with like-minded members in Groups.