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

Travel is supposed to be about experiencing new places, making memories, attending concerts, visiting family, exploring cities and enjoying everything Canada has to offer. But for people living with frontotemporal degeneration (FTD), travel can come with barriers that many people simply cannot see. FTD is a group of progressive neurological conditions that can affect behaviour, personality, executive functioning, language, communication and movement. Someone living with FTD m

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 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

Frontotemporal dementia (FTD) is a complex and often misunderstood group of neurodegenerative conditions that primarily affect the frontal and temporal lobes of the brain. Unlike more widely recognized dementias, FTD tends to emerge earlier in life and often alters personality, behavior, language, and emotional regulation. While there is currently no cure, a growing body of research suggests that creative expression—particularly through art—can offer meaningful benefits for i

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

Frontotemporal dementia (FTD) is a complex brain disorder that affects behavior, language, and movement. Diagnosing it can be challenging because its symptoms often look like other conditions, such as depression or Alzheimer’s disease. Why Is FTD Hard to Diagnose? FTD develops slowly over time. Early signs like personality changes, trouble speaking, or poor decision-making can be subtle and mistaken for other problems. Because of this gradual onset, health care professionals

For anyone affected by frontotemporal degeneration (FTD) , including frontotemporal dementia (FTD) , behavioral variant FTD (bvFTD) , primary progressive aphasia (PPA) , progressive supranuclear palsy (PSP) , corticobasal degeneration (CBD/CBS) , or FTD with motor neuron disease (FTD-ALS) finding reliable information and support can be challenging. That’s why the FTD Disorders Registry stands out as a key resource for patients, caregivers, family members, and the medical an

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

As we approach Rare Disease Day on February 28 , we are reminded why raising our voices matters. Rare diseases may be individually uncommon, but collectively they affect millions of people worldwide and thousands of families here at home. They are our parents, siblings, partners, friends, coworkers, and neighbours. Behind every diagnosis is a family navigating uncertainty, searching for answers, advocating for care, and holding onto hope. For families affected by frontotempor