A conversation becomes harder to follow. A familiar routine begins to unravel. Someone you love responds in ways you do not recognize.
When dementia begins with changes in language, behavior, or judgment, families may spend months searching for answers before they hear the words frontotemporal dementia (FTD).
During World FTD Awareness Week, September 28–October 4, 2026, we join the global call to put a “Spotlight on FTD.” At AGE-u-cate, that means sharing knowledge, recognizing the people behind the diagnosis, and helping communities respond with greater understanding. Explore this year’s awareness campaign.
It also means celebrating our Education Partner, For Their Thoughts® Foundation, and founding executive director Betsy Hall, whose experience caring for her mother helped shape a mission to support other families.
Frontotemporal dementia refers to a group of disorders involving progressive damage to the brain’s frontal and temporal lobes. These regions help us manage behavior, make decisions, communicate, and connect with others.
FTD often affects people during their working and family-raising years. Most cases occur between ages 45 and 64, although it can develop earlier or later. Unlike the familiar picture of dementia centered on memory loss, FTD may first appear through changes in personality, language, or movement. Learn more from the Association for Frontotemporal Degeneration (AFTD).
That difference matters. When we recognize only memory-related symptoms, we can miss families who urgently need answers and support.
Symptoms vary depending on the areas of the brain affected. Changes may include:
These changes can be misunderstood as intentional behavior or mistaken for another condition. Persistent changes deserve medical evaluation; a clinician may recommend assessment by a specialist familiar with frontotemporal disorders. The National Institute on Aging explains FTD symptoms and diagnosis.
For families and care professionals, understanding the disease can change the conversation. A troubling interaction becomes a reason to consider what support the person needs.
Families deserve research updates that explain both the promise and the limits of new findings.
A study published in Nature Communications on September 14, 2026, reported early results for an experimental oral drug called VES001. Researchers are developing it for FTD associated with changes in the GRN gene, which can reduce levels of a protein called progranulin.
The phase 1 study involved 79 healthy adults. Researchers found that the drug increased progranulin levels in blood and cerebrospinal fluid and met its short-term safety and tolerability objectives.
This is an early finding, not evidence that the drug slows FTD. Participants did not have FTD, and repeated dosing lasted only seven days. Further studies must establish whether this approach can safely benefit people with the disease. Read the published VES001 study.
In October 2025, Alector reported that its phase 3 trial of latozinemab, another experimental treatment for GRN-related FTD, did not meet its goal of slowing clinical progression, despite increasing blood progranulin levels.
The result illustrates an essential distinction: changing a biological marker does not necessarily translate into better daily functioning or slower disease progression. Read Alector’s trial results.
There is currently no approved treatment that slows or stops FTD. Symptom management and individualized support remain central to care. See AFTD’s disease overview.
Research gives us reasons to keep looking ahead. Families also need people who will show up for them today.
At AGE-u-cate, we are proud to recognize For Their Thoughts Foundation as an Education Partner.
For Betsy Hall, FTD is deeply personal. Her mother, Mary, was diagnosed with the disease, and Betsy experienced firsthand the uncertainty and isolation that can surround dementia caregiving.
In a recent account of her family’s journey, Betsy described realizing that people sometimes stayed away because they did not know how to help. That experience helped shape FTT’s work: bringing dementia education and storytelling into communities while connecting families with practical resources and financial relief. Read Betsy’s story.
FTT’s emphasis on caregiver support, empathy, and reducing stigma aligns closely with AGE-u-cate’s commitment to dementia education. Our partnership reflects a shared belief that understanding should lead to action.
A family should not have to explain dementia from the beginning every time they ask for help. A caregiver should have somewhere to turn. A person living with FTD deserves continued connection, respect, and opportunities to participate.
Visit For Their Thoughts Foundation to explore its mission, resources, and ways to get involved.
Support begins with the individual: their preferences, history, abilities, and goals.
AFTD recommends adapting meaningful activities as needs change and building a care team that can help families navigate symptoms and care decisions. Caregiver support groups can also offer connection with people who understand the experience. Explore AFTD’s guidance for managing FTD.
For friends and community members, involvement can begin with a specific offer: bring a meal, stay in touch, or ask what would make a visit more comfortable. Keep inviting the family into community life, allowing room for plans to change.
Awareness becomes valuable when someone feels its effect in an ordinary day.
How can organizations help staff, families, and community members approach dementia with greater empathy?
Dementia Live®, AGE-u-cate’s immersive dementia education experience, is designed to deepen understanding of challenges associated with cognitive impairment and sensory change. Organizations can use it for staff development, family education, and community outreach. Explore how Dementia Live is used.
No simulation can reproduce an individual’s experience of FTD. Dementia Live provides an opportunity to reflect on how we communicate, offer help, and respond when someone is struggling. Paired with education about FTD, it can help start meaningful conversations about more responsive, person-centered support.
This World FTD Awareness Week, we invite care providers, community organizations, and advocates to take the next step.
Bring Dementia Live to your organization and turn awareness into compassionate action.
Together with partners such as For Their Thoughts Foundation, we can help more people recognize FTD, stay connected to families, and make understanding part of everyday care.