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

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

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,

Frontotemporal dementia (FTD) is a lesser-known but deeply impactful form of dementia that primarily affects the frontal and temporal lobes of the brain. Unlike Alzheimer’s disease, which often begins with memory loss, FTD tends to first alter behavior, personality, language, and decision-making. Because it frequently develops earlier in life—often between the ages of 45 and 65 it can disrupt careers and financial stability at a particularly critical stage. The Workplace Chal

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

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

Frontotemporal dementia (FTD) is one of the most misunderstood and under-recognized neurodegenerative diseases in Canada. For families, the journey to diagnosis is often long, confusing, and emotionally devastating. For medical professionals, it can be an uncomfortable clinical challenge; rare, complex, and lacking a single definitive diagnostic test during life. But that discomfort cannot become inaction. If we are to truly support patients and families living with FTD, we m

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