Archives March 2025

• Living Well with an FTD Diagnosis – Members of AFTD’s Persons with FTD Council will discuss how they live fulfilling, meaningful lives despite their diagnoses – and how care partners can provide support along the way.
• FTD: At the Crossroads of Neurodegenerative Disease – Dr. Penny Dacks of AFTD joins two leading FTD researchers, Dr. Michael Benatar of the University of Miami and Dr. Corey McMillan of the University of Pennsylvania, for a look into the work currently being done to bridge the research and clinical-care gaps between FTD and ALS.
• Join AFTD’s Movement for Change! – AFTD Advocacy and Volunteer Engagement Director Meghan Buzby will discuss how volunteering can amplify your impact and how your voice can drive the change needed for a brighter future for those affected by FTD. UPDATE: Emma Heming Willis is now confirmed and will be joining Meghan for this session!

Additionally, several breakout sessions are available exclusively to virtual attendees:

• Growing Up with FTD: Young Caregivers on the FTD Journey 
• Understanding and Approaching Behavioral Symptoms in FTD
• Finding Balance: Practical Tools to Protect Your Mental Health 
• Power in Numbers: How the FTD Disorders Registry Drives Groundbreaking Research

This year’s conference Keynote Speaker is Katie Brandt, MM, of Mass General Hospital’s FTD Unit, whose life has been twice touched by dementia – her father had Alzheimer’s while her late husband was diagnosed with FTD when he was just 29. Her Keynote Address will focus on how she has channeled her experiences into helping others facing FTD through her advocacy and support work.

A recent episode of Inside Edition explores the experiences of the late Susan Suchan and her family as they navigated her symptoms and eventual FTD diagnosis. The family’s FTD journey is the subject of the documentary “Susan,” which will debut later this year.

Seven Years of Uncertainty

Suchan’s daughter Heather Miller told Inside Edition that her mother was her best friend and an excellent grandmother. Over time, however, Suchan began acting differently; the changes were subtle at first but became more apparent and worrying over time. After Miller had a miscarriage, she phoned her mother for support, only for Suchan to uncharacteristically answer, “Why would you think I could come?”

In 2006, Suchan went to the doctor after a concerning incident where she could not smell a fire that had broken out in her kitchen. She soon was diagnosed with early-onset Alzheimer’s disease – inaccurately, as it turned out. It would be seven years before Suchan and her family finally received the correct diagnosis: FTD.

“There’s Diagnosis, There’s Death, but in Between, There’s Life”

After an initial period of shock and helplessness, Suchan adopted a positive, determined outlook, and committed herself to educating others about life with FTD. Miller previously told AFTD that Suchan made it her mission to find others like her and bring their voices to the forefront; she told Inside Edition that her mother’s goals were to live life to the fullest and to help as many people as possible. “She realized, ‘I’m still alive, I’m still living’,” Miller said. “She used to say, ‘There’s diagnosis, and there’s death, but in between, there’s life.”

Eventually Suchan met the documentarian Russ Kirkpatrick, agreeing to let him and his crew film her FTD journey so she could show the world what this disease is truly like. While not everyone diagnosed is aware of their condition due to anosognosia, a common symptom of FTD, Kirkpatrick told Inside Edition that Suchan described how FTD felt to her in an unfilmed conversation. “There was a moment where [I asked], ‘How would you describe what’s going on?’”, Kirkpatrick recalled, to which Suchan responded, “It’s like there’s a worm in your head, munching around; you never know where it’s gonna go and what you’re left with after.”

Suchan died in 2018. The documentary Susan is currently showing at film festivals, with discussions about distribution ongoing.

Others who have navigated the FTD journey have also put their experiences to film. The short film Pedacito de Carne shares what it is like to navigate FTD for millennials and their parents; the film is based on the lived experiences of AFTD Ambassadors Diana and Sandra Gonzalez-Morett as their mother’s care partners.

How does a great scientific idea become an effective treatment? It’s a long and complicated process! Drug development involves many key players, including researchers, companies, regulators, funders, patient advocacy organizations like AFTD and, importantly, community members with lived experience of FTD. The field of FTD has made exciting progress in the past decade, with treatments closer than ever. This webinar explains the complexity of FTD drug development and how there are distinct barriers at different stages of development; how the field of FTD has evolved, bringing both hope and new challenges; AFTD’s role in supporting research across the pipeline; and what the audience can do to spearhead progress.

This Perspectives in FTD Research Webinar is presented jointly by AFTD and the FTD Disorders Registry. The webinar is sponsored by UCB.

AFTD’s History of Investing in Biomarker Research

Diagnostic Biomarkers: An Especially Urgent Need

A New Research Initiative to Find Diagnostic Biomarkers

Can the risk of developing FTD be changed by environmental exposures, lifestyle, diet, and other factors? Are the genetic risks fully understood? These questions are regularly asked by affected families and at-risk individuals. On January 22-24, 2025, the third annual AFTD Holloway Summit convened academic scientists, nonprofit partners, persons with lived experience, and AFTD staff and board members to discuss the state of risk factor research for FTD. Through the leadership of meeting co-chairs, Kaitlin Casaletto, PhD (UCSF) and Chiadi Onyike, MD, MHS (Johns Hopkins University), an agenda was developed that covered the current status of FTD risk factor research and what has been learnt from related fields such as Alzheimer’s or ALS that could apply to FTD.
AFTD Holloway Summits are made possible through the generous support of AFTD Board Member Kristin Holloway and the Holloway Family Fund.

“Navigating Lee’s FTD diagnosis was such a difficult and confusing time, and wondering about preceding risk factors only added to that uncertainty,” AFTD Board Member Kristin Holloway said. “While risk factor research in FTD is still early, I was proud to see researchers convened at this year’s Holloway Summit discussing the best ways to get better answers for these questions at the forefront of people’s minds impacted by FTD.”

Discussions at the Holloway Summit were based on the premise that many factors could, at least theoretically, contribute to risk of FTD. Examples include occupation, lifestyle, head trauma, exposure to pesticides or pollution, genetics, early childhood stress, and many more. A 2020 report of the Lancet Commission summarized 12 modifiable or lifestyle factors which influence likelihood of dementia later in life. These include less education in early life, in mid-life: hearing loss, traumatic brain injury, hypertension, high alcohol consumption, obesity, and in later life: smoking, depression, social isolation, physical inactivity, air pollution, and diabetes

The field of FTD has much to learn from related fields such as Alzheimer’s disease and ALS. Both have had far more research completed on this topic. Lessons learned from these related neurodegenerative diseases were woven throughout the Holloway Summit program as one mechanism to aid in the forward momentum of FTD risk factor research. Moreover, the disease mechanisms of FTD partially overlap with these diseases, raising the possibility that some conclusions from these diseases could apply to FTD.

Unfortunately, risk factor research is challenging to conduct for a disease like FTD. Large amounts of data are needed, and that data must be reliable and interpretable.  The theoretical risk factors, such as history of head trauma or environmental toxin exposure, are rarely documented reliably in sources like medical records. Even more concerning for FTD, diagnosis itself is often inaccurate. Some people are diagnosed incorrectly as having FTD while others have their FTD diagnosis missed or mislabeled as “all-cause dementia,” Alzheimer’s disease, or psychiatric disease. As a result, it is difficult to fully identify the factors directly linked to FTD onset and progression.

Alzheimer’s disease, or psychiatric disease. As a result, it is difficult to fully identify the factors directly linked to FTD onset and progression.

At the Holloway Summit, there were vibrant discussions around risk factor study design and increasing the ongoing efforts to identify risk factors for FTD. Panel discussion highlighted resources available for risk factor research and the ethical considerations for conducting and communicating risk factor research. These sessions were a few components in the program that sought to foster collaboration and accelerate risk factor research forward.

Importantly, the field of risk factor research in FTD is relatively new. While the Holloway Summit was foundational to support further research, there are no known definitive risk factors beyond genetics currently. Families touched by FTD, researchers, and clinicians, should take care when analyzing any risk factor studies, and understand that it would take repeated research, studying many people, and a significant period of time, to definitively identify a risk factor. As new scientific studies emerge, they should be interpreted with care. First, the results of any single study should be confirmed with other studies that use different or complementary methods. Such confirmation is central to the scientific approach. Even once confirmed, healthcare providers and families should not always act on the information. For example, if life-long fitness and exercise is associated with a lower risk of FTD (as it is for other types of dementia), it may not follow that a diagnosed person will have a slower rate of decline if they start exercising after diagnosis. The safety and overall benefit of action should always be central to any decision-making.

AFTD is committed to keeping the community informed about risk factor research and guiding researchers to continue these studies. A consensus article will be written by Holloway Summit attendees which will then be shared with the FTD community.

For more information about current and past Holloway Summit meetings, check out the Holloway Summit page on our website.

By Anne Fargusson, RN, AFTD Persons with FTD Advisory Council

• Any kind of exercise routine you can safely attempt is a good idea, whether you join a gym or simply walk at home. This not only burns calories, it also seems to help curb temptations.
• I personally buy cookies, but I put them away in the cupboard, so I am not tempted to grab them as I walk by.
• Suck on hard candy to satisfy that oral fixation. They last a long time and don’t have many calories. If you crave chocolate, there are chocolate-flavored options.
• Low-calorie, portion-controlled treats are available. You can get ice cream fudge bars that are around 100 calories each.
• If you’re at a restaurant, get dessert there rather than at home so you aren’t tempted to eat seconds (or thirds).
• Keep diet soda on hand.
• Make sure you are well hydrated with water. There are plenty of options: flavored and unflavored, carbonated and still.
• Limit your alcohol intake. Those calories add up quickly.
• Stress and a lack of sleep tend to exacerbate cravings.
• Beware of loose clothing. You could be gaining weight without knowing it – until you put on your favorite jeans.
• Brush your teeth after meals. It seems to offset the need to continue eating.
• Don’t eat all the giveaway snacks at your supermarket or your wholesale club!

Two recent studies on proteins and FTD are helping to lay the foundation for the potential development of diagnostic and prognostic FTD biomarkers, a Feb. 9 Alzforum post reported.   

Studies Identify Relationships Between Certain Proteins and FTD Disorders 

Getting an FTD diagnosis is an extensive process that can involve multiple rounds of cognitive or behavioral testing, MRI and PET scans, and referral to one or more specialists. With usable biomarkers, clinicians would not only be able to identify FTD disorders more quickly but also discriminate between pathologies, which is currently only possible post-mortem. Because many experimental drugs and interventions for FTD are often specific to a pathology, it is important for clinicians to be able to tell them apart. 

Two studies have identified novel pathways for biomarker development by focusing on proteomics, the study of proteins and their interactions. The studies analyzed protein levels in cerebrospinal fluid (CSF) to determine which were affected by the onset of FTD and not by other disorders, which would provide a benchmark for further biomarker research.  

The first study analyzed levels of 1,981 different proteins in a cohort of 162 participants with FTD risk-creating genetic variants who are enrolled in the Genetic Frontotemporal Dementia Initiative (GENFI), finding proteins that were altered compared to controls. In some cases, the authors noted protein levels changing before symptoms developed. The researchers found proteins unique to each of the mutations: C9orf72, GRN, and MAPT; for example, elevated levels of the calcium-binding protein calbindin 2 strongly correlated with disease severity in the persons with C9orf72 genetic mutation, with concentrations of it and other less-prominent proteins rising as FTD worsens.  

The study also found that general biomarkers for neurodegeneration that rise in many forms of dementia also rise with FTD. However, these biomarkers are not specific to FTD; raised levels of the protein neurofilament light, for example, are a general biomarker indicating damage to the communicative components of neurons. Of the 1,192 proteins surveyed, only 221 were specific to FTD. So while these types of proteins may not be able to differentiate between different neurodegenerative diseases, this information could indicate that something is causing neuronal damage.  

The second study involved a smaller cohort of 116 people participating in the ALLFTD study, with researchers analyzing the levels of 4,138 proteins, the most extensive assortment by an FTD study so far. The authors noticed that proteins associated with synapses (the structures neurons use to communicate with each other) and lysosomes (a cell component acting as a “recycling center” for waste and invading pathogens) were lower compared to controls without FTD, while spliceosomes (a “ribonucleoprotein complex” that combines RNA and proteins to perform essential tasks in a cell) were elevated. When the researchers sorted proteins according to gene mutation, changes in spliceosome and lysosome protein levels were more common with C9orf72 and GRN, which suggests that they are associated with a pathology centered around the protein TDP-43.  

Proteomics and FTD: What Comes Next? 

While the two studies achieved a milestone by identifying proteins related to FTD, the authors of both emphasized that further research is needed to develop accurate biomarkers specific to FTD disorders. One contributing factor to the heterogeneous nature of FTD disorders is the variability of proteins that can drive the pathological underpinnings of the disease, with TDP-43 and tau making up the majority of cases. Distinguishing between these pathologies will be crucial for making the diagnostic process more accurate and for ensuring that people with FTD receive the right treatment.
Moving forward from the current studies, researchers will conduct more extensive and in-depth proteomic studies to further narrow the potential biomarkers field and validate existing research.  

As highlighted by Julio Rojas, MD, PhD, co-author of the ALLFTD-focused study, both studies are limited by the number of proteins analyzed. Dr. Rojas notes that the GENFI-focused study captured roughly 10% of the total proteins in CSF.  

“Also, although findings in CSF are great progress, the field needs blood-based biomarkers, which are more easily implemented on clinical grounds, especially in clinical trials,” Dr. Rojas told Alzforum. “There is also a need to run proteomics studies in diverse populations of non-European descent. The field of clinical FTD research is living a golden era, and more progress on biomarkers and therapeutics will likely be seen in the upcoming years for this devastating group of diseases.” 

Proteomics has uncovered relationships between proteins and different FTD pathologies. Last year, Dr. Benjamin Ryskeldi-Falcon and his team discovered how the protein TAF15 may play a role in the development of an FTD subtype once thought to be associated with the FUS protein. Longitudinal studies like ALLFTD and GENFI provide families facing FTD an opportunity to contribute to FTD research. If you have questions about how to join a study, contact AFTD’s HelpLine at 1-866-507-7222 or [email protected]. 

Dear HelpLine,
My brother was diagnosed with FTD. I see that AFTD offers support groups, but I’m not sure who they are for, or which one is right for me. Can you help me understand my options?

Local and Regional Support Groups

An Australian Study uses an experimental screening tool to examine the propensity and nature of criminal risk behaviors in dementias like FTD. While further research is needed to better understand criminal risk and dementia, the study finds that these behaviors may be more common than previously expected and occur across dementia types.

Study Shows More Severe Criminal Risk Behaviors in FTD than Alzheimer’s

Published in the journal Alzheimer’s & Dementia – Diagnosis, Assessment & Disease Monitoring, the study notes that behavioral changes are typically the earliest and most noticeable dementia symptoms. Because FTD can affect the areas of the brain responsible for regulating behavior, these changes are usually more pronounced in FTD than in other dementias, and can include disinhibition and a loss of empathy for others. Pwith FTD disorders may end up accidentally committing crimes because their sense of social and legal norms has been altered; however, many people with FTD do not show criminal behavior, as the symptoms affect everyone differently.

While the authors identified prior research that showed criminal risk behaviors were more common in behavioral variant FTD (bvFTD), they theorize that the actual prevalence of criminal risk behaviors in dementias is likely an underestimate. To try to capture the prevalence of these behaviors in Australia and to identify predictors of criminal risk for people with dementia, the authors set out to develop and test a novel screening tool.

Creating the Misdemeanors and Transgressions Screener (MATS) began with a literature review to find reported criminal risk behaviors; the resulting list of behaviors was then categorized into broad domains such as traffic violations, financial recklessness, and theft. Researchers accounted for potentially criminal behavior before the onset of dementia during screening. The team asked a care partner, spouse, or family member who spent regular time with a person diagnosed to take the screener while control participants self-reported; the authors noted this as a limitation of their study and encouraged future research to use self-reporting from persons diagnosed instead.

A cohort of people with dementia was recruited through the FRONTIER Dementia Research Group, a specialist dementia clinic operated by the University of Sydney. Of these participants, 64 had bvFTD, 37 had Alzheimer’s disease, and 43 had semantic variant primary progressive aphasia (svPPA) that predominantly affected either the left or right temporal lobe.  Fifty-three controls without dementia were recruited from community organizations, websites, and word of mouth. The participants were asked to complete the questionnaire, with the team asking for details and clearing up misunderstandings where necessary.

Onset of New Criminal Risk Behaviors at 50 or Older: A Potential Clinical Sign of FTD

The results of the interviews did not reveal any significant differences between the interviewed groups in history of potential criminal behavior, age, or years of education. In bvFTD, however, the team noticed a higher ratio of men to women who experienced criminal risk behaviors (51 to 13).

Among those experiencing criminal risk behaviors after being diagnosed, 19.1% had interactions with the police as a result; this is a stark contrast to the lack of encounters with police faced by control participants. The authors underscored the role of dementia in this; control participants reported benign infractions such as forgetting to scan at checkout or catching themselves speeding, while people with dementia were involved in more serious incidents, like altercations with strangers or going missing due to roaming/wandering. Participants who answered for people with dementia noted that those who encountered law enforcement faced apprehension, warnings from officers, and, in some cases, being banned from an establishment.

The authors confirmed earlier findings that bvFTD had the highest prevalence of criminal risk behaviors but also found it elevated in people with svPPA, predominantly affecting the right temporal lobe. The most common behaviors experienced by participants with dementia were physical assault, inappropriate behaviors, and financial/professional recklessness, while traffic violations and verbal abuse were common in both persons diagnosed and control participants.

The study notes how the data aligns with earlier work suggesting criminal risk behaviors can result from disinhibition and agitation/paranoia, the former being common in FTD. Underscoring the spike in criminal risk behaviors in bvFTD after diagnosis, the authors also highlight how the onset of uncharacteristic criminal risk behaviors under the age of 50 is a potential clinical sign of FTD. These findings have implications for identifying behaviors early for clinical management and education of frontline workers such as law enforcement and legal professionals to divert people with dementia from the criminal justice system.

As highlighted in an issue of Scientific American, the U.S. Justice System often stumbles when confronted with people who have FTD and other forms of dementia. For more information about criminal risk and FTD, be sure to watch the recording of AFTD’s webinar At The Intersection of FTD and the Law. Are you concerned that you or a loved one may experience these behaviors due to FTD? AFTD’s HelpLine is here to support you – contact the HelpLine at 1-866-507-7222 or [email protected].