Frontotemporal dementia (FTD) is often described as a single disease, but it is better understood as a family of neurodegenerative disorders that can affect behavior, personality, language, movement, and cognition. For some families, genetics plays a major role. For others, there is no identifiable genetic cause. Understanding the connection between FTD and genetics can help families make informed decisions about genetic testing, better understand patterns of disease within a

Frontotemporal dementia (FTD) affects thousands of Canadians and is one of the most common forms of young-onset dementia. Yet many people are surprised to learn that Canada does not have legislation specifically dedicated to FTD. Instead, FTD is included within broader dementia legislation and national policies. While this means people living with FTD are recognized in Canada's approach to dementia care, it also raises an important question: Does a broad dementia strategy ade

Imagine watching someone you love slowly change before your eyes. They become impulsive, lose empathy, struggle to communicate, or begin making decisions that seem completely out of character. Friends assume it's stress. Employers think it's burnout. Doctors diagnose depression, bipolar disorder, anxiety, menopause, or even a midlife crisis. Years later, the truth finally emerges: it was never a mental health condition. It was Frontotemporal Dementia (FTD). For far too many C

Every year, organizations across Canada receive funding, donations, and public trust to improve the lives of people affected by dementia. They educate, advocate, and influence policy. They speak on behalf of the dementia community. But here's the question we need to ask: Who is being heard? For Canadians living with frontotemporal dementia (FTD), the answer is too often not us. FTD is one of the most devastating forms of dementia. It frequently affects people in their 40s, 50

Imagine walking into work one day and noticing that your colleague has changed. They seem more impulsive, forgetful, emotionally distant, or they begin saying things that feel inappropriate or out of character. Their work performance declines, relationships become strained, and whispers begin circulating through the office. Most people assume stress. Burnout. Depression. Laziness. A bad attitude. What few people consider is that these could be the first signs of Frontotempora

When Canadians think about dementia, most think of memory loss and Alzheimer's disease. Yet thousands of individuals and families across the country are facing a lesser-known and often misunderstood condition: Frontotemporal Dementia (FTD). FTD is the most common form of dementia diagnosed in people under the age of 60, yet awareness of the disease remains alarmingly low. For many families, the journey begins with years of confusion, misdiagnosis, and isolation. Without great

Understanding Behavioural Changes, Public Safety, and the Need for Better Canadian Supports Most Canadians are familiar with Alzheimer's disease and the memory loss that often accompanies it. Far fewer understand behavioural variant Frontotemporal Dementia (bvFTD), a devastating neurological disease that can fundamentally alter a person's personality, judgment, impulse control, and social behaviour. For families, the experience can be shocking. A once-kind spouse may become v

When people hear the word “dementia,” many immediately think of memory loss. But dementia is not one single condition, nor does it affect everyone the same way. True inclusivity means understanding that people living with dementia experience the world differently — and that every experience deserves dignity, respect, and support. At FTD Canada, we believe inclusivity goes beyond accessibility ramps, large-print resources, or supportive language. Inclusivity also means recogni

Dementia is not a single disease but a group of conditions that affect memory, thinking, orientation, and judgment. Dementia gradually changes how a person interacts with the world, and one of the most challenging realities is the risk of becoming lost. Research and lived experience show a striking statistic: six in ten people with dementia become lost at some point, often without warning. This can happen during a familiar walk, a routine errand, or even inside a neighbourhoo

Canada is at an important turning point. As more people are living with dementia, the question is no longer whether communities should adapt—it is how quickly and how widely we can make that change happen. A shift toward dementia-friendly communities is already underway, but it is uneven. Some places are leading the way, while others are still just beginning to recognize what inclusion really means. The next step is clear: we need stronger, broader advocacy to make dementia-f

We like to believe we’re in control of our decisions. From what we say in a conversation to how we react in tense moments, we assume there’s a “pause button” between impulse and action—a space where judgment lives. Frontotemporal dementia (FTD) quietly erodes that space. And that’s what makes it so unsettling. The Disease That Doesn’t Look Like a Disease Unlike many neurological conditions, FTD often doesn’t begin with obvious physical decline. There’s no tremor to point at,

Every April, National Volunteer Week shines a spotlight on the people who give their time to strengthen communities across Canada. For organizations focused on rare diseases like FTD (Frontotemporal Dementia), volunteers aren’t just helpful, they are essential. FTD is a complex and often misunderstood condition. Unlike more widely recognized forms of dementia, it tends to affect younger individuals and presents with changes in behavior, personality, and language. Because of t

A diagnosis of frontotemporal dementia (FTD) can feel overwhelming, disorienting, and even isolating. But one truth matters above all: you are not alone. Across the world, individuals, families, care partners, and professionals are navigating this journey together—learning, adapting, and building supportive communities along the way. While an FTD diagnosis may answer some long-standing questions, it often introduces many new ones. It marks the beginning of a path that require

What Is FTD-ALS? FTD-ALS occurs when symptoms of both frontotemporal dementia and amyotrophic lateral sclerosis develop in the same individual. Each disease affects different parts of the nervous system. FTD primarily damages the frontal and temporal lobes of the brain. These areas are responsible for personality, behavior, decision-making, and language. ALS, on the other hand, attacks the motor neurons that control voluntary muscles, leading to progressive muscle weakness. B

Yesterday in the chamber of the Legislative Assembly of Manitoba, something quietly historic happened. During a Private Member’s Statement, Frontotemporal Dementia (FTD) was recognized on the legislative record, what appears to be the first time the disease has been specifically acknowledged in a legislative chamber anywhere in Canada. For many people, it may have sounded like a brief moment in the routine of legislative proceedings. But for families living with FTD, it repre

Behavioral variant frontotemporal dementia (bvFTD) is the most common type of frontotemporal dementia (FTD) , accounting for about half of all FTD cases. It is sometimes also called frontotemporal dementia or Pick’s disease . What makes bvFTD different from many other dementias is that the earliest changes usually involve personality, behavior, and social awareness , rather than memory. A person may begin acting very differently from how they used to, sometimes in ways that