Dear HelpLine: Home and Community Care Options


It’s important to consider the cost of these services, and whether they are covered by insurance. Medicare and private insurance policies often cover short-term skilled home care with a visiting nurse, physical therapist, or occupational therapist, but only after an acute medical event such as a hospitalization or a medically necessary inpatient rehabilitation stay. These services are meant to be rehabilitative and end once the person has met their goals.

Medicare and commercial insurance do not cover the cost of home care provided by home health aides or adult day programs. However, in some states Medicaid waivers or other income-based programs can help cover these costs for qualified families, although you may have to go on a waiting list.

Long-term care insurance policies and veterans benefits can also help cover home-care costs for those who qualify. For others, these expenses must be paid privately. If private home care is considered medically necessary, the costs might be tax-deductible, so be sure to speak with your tax consultant first.

Adult day programs are another community-care option, providing daily care in a group setting with routine, structure, and activities. Some even offer transportation to and from the site. Respite care, meanwhile, is an option that provides short-term home or facility-based care so that family care partners can get a temporary break, and is offered in many states. AFTD offers Comstock Respite Grants to subsidize the cost of this short-term care option.

Your local Area Agency on Aging can provide a list of home care agencies and adult day programs near you, along with more information about respite care, income-based options, and Medicaid waivers. Use the Eldercare Locator, an online tool developed by the federal Administration for Community Living, to find an Area Agency on Aging in your community.

Don’t overlook word of mouth – friends, local religious organizations, and other informal networks can suggest resources. And there may be a support group for FTD care partners in your area, where others on the FTD journey can recommend care options that worked for them and help you navigate the process of obtaining outside care. Use AFTD’s website to find a support group near you.

Since FTD is not as well-known or common as other types of dementia and frequently develops earlier in life, FTD families must often adapt existing eldercare and/or Alzheimer’s-focused services for their loved one’s needs. AFTD provides educational resources that families can share with care providers who are willing to learn about FTD on the For Health Professionals section of our website. Specifically, you can share issues of the AFTD publication Partners in FTD Care so providers can better understand how FTD differs from other dementias.





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Remember Me Podcast Discusses Grief with AFTD Staff in Recent Episode


In a special bonus episode of the “Remember Me” podcast, AFTD Support & Education Director Esther Kane, MSN, RN-CDP, and Support Services Manager Sarah Lopata, MS joined hosts Rachael Martinez and Maria Kent Beers, both former FTD caregivers, to talk about grief and the FTD journey.

Everyone Experiences FTD, and Grief, Differently

FTD disorders are highly diverse in their symptoms, so living with a diagnosis is different for everyone. Similarly, care partners, family members, and friends of people living with FTD experience the journey differently, carrying varied emotions in response to the challenges they experience. As Kane notes on Remember Me, grief can manifest in a multitude of ways that aren’t always apparent.

“I don’t think that people always understand the amount of grief that they’re actually carrying,” Kane said. “I think it’s one of the hardest parts of about the journey. [People say] I’m really mad that this happened, or I’m really sad that this happened, and is that grief? Yes, you’re grieving.”

Martinez said that she was initially angry and frustrated when her father’s FTD symptoms began to show. Not knowing what was wrong, Martinez was “really upset, always – I’d go to bed upset and wake up upset.

“But looking back, that’s when…I knew what was going on,” she continued. “I knew he was changing, I knew I was losing pieces of him, but I couldn’t bridge the gap between that and feeling” upset.

Beers, meanwhile, speaks about getting a diagnosis for her mother – the finality of it, and the emotional weight it delivered.

“I remember the plastic chairs and just the look in the doctor’s eyes and…I just don’t even remember anything that happened after that moment, like walking to the car,” Beers said about the day her mother was diagnosed. “When the trauma started, the grief kicked in.”

It Helps to Have Difficult Discussions Early

FTD’s symptoms severely limit one’s ability to continue driving, working, traveling, or even participating in family events. Loved ones of the person diagnosed thus often find themselves grieving life plans, family milestones, or career goals that they know will go unfulfilled. Grief can also create (or exacerbate) familial conflict as dynamics and relationships change. For these reasons, Kane says that it is important for families to discuss how to approach FTD.

“If I was going to give any advice, it’d be to have these conversations [early] with your [family],” said Kane. “If you can, start to talk about how would [you] want to manage if mom or dad got sick. What would [you] want to do?”

It is also important to discuss as early as possible what the person living with FTD wants in terms of medical care and long-term legal and financial planning, since they will not be able to advocate for themselves as their symptoms progress.

The episode emphasizes forgiving yourself as you navigate the FTD journey. As family members learn more about FTD, they may feel guilty about their past frustrations with their loved one’s symptoms. For example, when Beers told her mother that she was pregnant, she responded by asking if they could go to the store, making Beers feel as if she didn’t care.

“Then we were talking to an expert at the Penn FTD Center…and she was like, your mom had PPA…she probably did not understand what you said to her,” Beers said. “Nobody wants that to be what happens when you tell your parent they’re going to be a grandparent. But I just didn’t know; I didn’t know the disease.”

Learning to separate the disease from her mother helped Beers contextualize her behavior. “It’s the disease,” she said. “It’s not your mom, because you know she cared.”

Click here to watch the full episode.

Are you navigating FTD on your own? Do you have questions, or simply need someone who gets what you’re going through? AFTD’s HelpLine can guide you as you navigate all stages of the FTD journey; contact the HelpLine at 1-866-507-7222 or [email protected].





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The Lived Experience of FTD: Managing the Emotional Impact of Job Loss in FTD


When someone is diagnosed with FTD, it is almost guaranteed that they will eventually have to leave their job, usually long before they are ready to do so. The abrupt end of one’s career can cause depression (our jobs contribute significantly to our sense of self-worth) and stress (how will I pay my bills now?). It can also result in profound guilt: feeling like you are no longer a “productive member of society” is a heavy emotional burden to bear.

If you are currently navigating this situation, know that these circumstances are not your fault — you’re doing the best you can within a deeply challenging situation. Here are some suggestions to help you work through this new phase of your life.

Acknowledge Your Feelings

Recognize that guilt, anger, and sadness are all natural responses to major life changes, particularly when they impact your loved ones. Allow yourself to feel these emotions without judgment. It can help to write them down, or talk about them with someone you trust.

Reframe the Situation

Shift your focus from what you feel you’ve lost to what you are still contributing. Your presence, love, and emotional support are incredibly valuable. Helping others can be a great way to deal with the grief of your FTD. Although you may no longer have a job, many organizations are looking for volunteers just like you.

Communicate Openly

If your guilt stems from how you believe your loved ones are affected by your FTD diagnosis and subsequent job loss, have open conversations with them. You may find they are more understanding and supportive than you thought.

Set New Goals

In the absence of your career, small yet meaningful actions can help rebuild a sense of purpose. Identify ways to adjust your contributions, whether emotional, practical, or even creative. Maybe you once donated regularly to a favored nonprofit, but no longer have disposable income following your diagnosis. If that is the case, you can still donate your time as a volunteer. At many organizations, volunteering is just as valuable as your monetary support.

Seek Support

Consider joining support groups for individuals living with an FTD diagnosis. Sharing your experiences with others who understand can reduce feelings of isolation and guilt. AFTD offers multiple ways to access support – reach out to the AFTD HelpLine for more information.

Professional counseling or therapy can also help you process and let go of guilt.

Practice Self-Compassion

Remind yourself that you didn’t choose FTD – it just happened. Treat yourself with the same kindness and understanding that you would offer a friend in your position. Practicing compassion on yourself is just as important as practicing compassion on others.

Engage in activities that bring you peace, like meditating, expressing your faith, going on nature walks, or taking part in your favorite hobbies. Remember that managing your health is a priority, and taking care of yourself is not selfish – it’s essential.

Focus on Financial Strategies

If financial stress is adding to your guilt, explore resources or benefits that might be available to help. If possible, consult a financial planner or advisor to help make the most of your current income and plan for the future. Organizations like AFTD may offer guidance – contact the AFTD HelpLine to learn more.

AFTD’s Quality of Life Comstock Grant helps people living with FTD access services or supports to improve their quality of life. Applicants with a documented FTD diagnosis may apply for a $500 grant that can be used (with the support and supervision of a primary care partner as necessary) to purchase the goods or services of their choosing.

Finally: Remember that it’s OK to ask for help, and it’s OK to take things one step at a time. Your value as a person is not determined by your income or productivity, but by the relationships and impact you have on those around you.





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February 9, 2025: Seattle, Wash. Virtual Meet & Greet


Join and learn from others who understand the FTD journey at this virtual AFTD Meet & Greet event for people in Seattle, Wash., and its surrounding communities on Sunday, February 9, starting at 2:00 p.m. PT.

Email event host Pooja Thorali at [email protected] to RSVP and receive the Zoom link. You can also download this flyer to learn more.





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February 22, 2025: In-Person Meet & Greet in Sparks, Nev.


AFTD Ambassador Scott Oxarart invites anyone impacted by FTD to join others on the FTD journey for a two-mile walk beginning at Nevada Veterans Memorial Plaza in Sparks (300 Howard Drive), starting at 10:00 a.m.

If you are unable to walk, reach out to Scott at [email protected] to find a better way to connect.

Download this flyer to learn more.





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Denali and Takeda Open FTD-GRN Clinical Trial Site at UPenn


Denali Therapeutics and Takeda Pharmaceutical Company’s phase 1/2 clinical trial for FTD caused by GRN mutations is opening its first U.S.-based trial site at the University of Pennsylvania (UPenn). The multicenter study is evaluating the safety and tolerability of the drug DNL593 in people with and without FTD.

DNL593 Reintroduces Progranulin Through Intravenous Delivery

In FTD-GRN, mutations of the GRN gene cause an impairment of the protein progranulin, which protects neurons in the brain. DNL593 was designed to address progranulin deficits by reintroducing it through an intravenous drip. The experimental drug uses a “protein transport vehicle,” a form of protein that moves others around, to help progranulin safely pass through the protective blood-brain barrier.

Data from preclinical studies of DNL593 showed that it improved progranulin uptake, the process by which cells absorb it from their surroundings. In mouse models, the drug prevented neurodegeneration and dysfunction of glial cells, which serve as the primary immune defense of the central nervous system.

Denali and Takeda began the phase 1/2 study in 2022 with the goal of enrolling 106 participants across the two halves of the study; before coming to the U.S., the trial operated in Europe, Brazil, and Turkey. The first study phase will evaluate single doses of DNL593 in adults without FTD; in the second phase people with FTD will receive multiple, increasingly larger doses (known as a “multiple ascending dose” phase).

Study Currently Recruiting Participants at UPenn Hospital

The U.S trial site is at the Hospital of UPenn in Philadelphia and is currently recruiting participants who are diagnosed with FTD-GRN for the second phase of the trial.

The second phase is a “double-blind” study, where half of the participants receive a placebo, and the rest the experimental drug. After this phase is completed, Denali and Takeda will proceed with an 18-month “open-label extension,” where all participants will have the option to take the drug. The companies expect to conclude dosing and data collection by November 2025.

For more information on the study, visit the ClinicalTrials.gov page for the trial, or the trial’s Penn Medicine page.

Are you interested in participating in more studies like this? Visit AFTD’s Studies Seeking Participants page to find more actively recruiting trials. And signing up with the FTD Disorders Registry can keep up to date on recruiting studies and let you share your experiences with researchers.





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Extracellular Vesicles in Plasma Could be FTD-ALS Diagnostic Biomarker, Study Finds


A study published in Nature Medicine finds that a type of particle associated with specific cell subtypes could potentially be utilized as a biomarker for FTD and ALS disorders. The particle, known as an “extracellular vesicle,” contains tau and TDP-43 proteins, which are both altered with FTD-ALS.

Extracellular Vesicles Facilitate Spread of FTD Proteins

Extracellular vesicles (EVs) are naturally released from most types of cells and play a key role in cell-to-cell communication by transporting proteins, lipids, and RNA between cells.

FTD and ALS are proteinopathies, a condition or disease caused by the dysfunction of proteins like tau and TDP-43. While tau levels in the bloodstream can identify people with Alzheimer’s disease early in progression, its use as a biomarker in other tauopathies is hampered by tau fragmentation in fluids outside of cells. Researchers have looked at levels of other pathological forms of tau and TDP-43 in plasma and cerebrospinal fluid (CSF) as biomarkers, with studies underway to make improved assays better capable of detecting the protein in blood and CSF.

However, EVs are known to transport healthy proteins and pathological forms of tau and TDP-43 between cells, protecting them and facilitating the formation of protein clumps that play a crucial role in FTD and ALS. Anja Schneider, MD, and researchers at the German Center for Neurodegenerative Diseases (DZNE) launched a pilot study to evaluate whether tau and TDP-43 levels in EVs could be biomarkers for FTD and ALS disorders.

The pilot study included 704 participants from the DZNE Clinical Register Study of Neurodegenerative Diseases (also known as “DESCRIBE”), including 37 people with genetically confirmed cases. Participants had a diagnosis of either behavioral variant FTD (bvFTD), progressive supranuclear palsy (PSP), Alzheimer’s disease, semantic variant primary progressive aphasia (svPPA), or ALS.

Tau and TDP-43 Levels in Extracellular Vesicles Can Distinguish FTD Disorders

A main area of focus for the study was the proportion of two different forms of tau to one another, known as “three repeat” and “four repeat” tau (3R and 4R) subtypes or isoforms. While 3R and 4R tau levels are typically balanced in healthy individuals, diseases like FTD and ALS can disrupt this and cause one form to become more prominent. Researchers found that the ratio of 3R to 4R tau in bvFTD, svPPA, and Alzheimer’s disease was skewed towards 3R. In PSP, which is associated with 4R tau, the skewed ratio was reversed.

The researchers noted that the ratio reflected disease severity but differed by disorder. For bvFTD, for example, a higher ratio of 3R/4R tau indicated that people experienced more severe symptoms, while a lower 3R/4R ratio was observed in people with PSP.

While there was no secondary protein against which to compare TDP-43, researchers noted that higher levels of pathological TDP-43 in EVs correlated with increased disease severity. TDP-43 levels could also be used to discriminate between disorders similarly to tau; EVs in people with ALS had 45 picograms per milliliter (pg/ml) of TDP-43, while people with PSP and control participants without FTD had approximately 9 pg/ml of TDP-43 on average.

Together, the biomarkers could be used to diagnose bvFTD, which is notoriously difficult to diagnose clinically due to its symptomology, which overlaps with other neurodegenerative diseases and psychiatric disorders. The study authors found that in people with FTD-causing genetic mutations, EVs reflected the proteinopathy associated with the mutation. In people with a C9orf72 mutation, which is associated with TDP-43, the 3R/4R tau ratio was 1.0, while TDP-43 levels were heightened – the opposite was true for people with a tau-associated MAPT mutation, with the tau ratio three to four times higher and TDP-43 reduced.

To validate their findings, the authors turned to a second cohort of participants outside of DESCRIBE, obtaining data from a group of people with FTD who participated in research at the Hospital de la Santa Creu i Sant Pau in Spain. The group included 65 people with ALS, 58 with ALS-FTD, 50 with bvFTD, 41 with PSP, and 23 with an FTD risk gene, as well as 50 without FTD to serve as controls. The researchers discovered that the data from the Spanish cohort, by and large, matched the data from the initial cohort.

While some researchers believe that the tested EVs originate in the brain, there is ongoing discussion about the possibility that they did not. While the origin of the EVs does not matter much for clinical testing, Dr. Schneider noted that finding the origin may be necessary for clinical trials.

“If you want to measure target engagement, then it would be nice to Dr. Schneider told Alzforum. “We need better ways to detect brain-derived extracellular vesicles.”

Are you interested in learning more about the search for FTD biomarkers? In May, the Foundation for the National Institutes of Health Biomarkers Consortium announced that the US FDA accepted its letter of intent to qualify a protein as a biomarker for the onset of genetic FTD symptoms.

Stay updated on opportunities to participate in research by joining the FTD Disorders Registry. The Registry is a powerful tool that connects people with lived experience to studies and allows them to share their insights with researchers, in order to drive FTD research forward.





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Tips & Advice: Incontinence – A Troubling Symptom


Incontinence is a common symptom of FTD and other dementias. But for both care partners and persons diagnosed, incontinence can be one of the more difficult symptoms to manage or even talk about, given its associations with private bodily functions and a perceived loss of dignity and independence. As FTD progresses, some persons diagnosed become unable to recognize their illness and may refuse or resist incontinence care or give off the “impression” they don’t care they are having accidents, further complicating matters.

FTD’s behavioral symptoms can contribute significantly to episodes of incontinence. Such symptoms include apathy, disinhibition, compulsive behavior, distractibility, and a lack of awareness about one’s condition (a symptom known as anosognosia) and movement changes. As the disease progresses, a person diagnosed with FTD may lose their ability to respond to the urge to use the bathroom; they may so do in a socially inappropriate location and may try to dispose of it in an unsanitary manner. Care partners should remember that such behavior is a result of FTD and is not done willfully by the person diagnosed.

Managing FTD Incontinence Episodes

While managing incontinence in FTD can be challenging for the person diagnosed and their care partner, the following guidelines can offer help:

  • Request a referral for an occupational therapy consult to assess supports needed to maximize independence.
  • Make a toileting schedule, with bathroom breaks scheduled every two to three hours, and try to follow it as closely as possible. It should include a scheduled toilet break right before bedtime.
  • Regularly provide verbal and visual cues to use the bathroom. For example, leaving the bathroom door open throughout the day can promote more frequent toileting, as can leaving the light on at night.
  • To further aid nighttime bathroom trips, use colored tape to make a path on the floor between the bedroom and the bathroom.
  • Limit the amount of liquids consumed after dinner. And avoid caffeine, which is a diuretic and causes increased urination.
  • Increase toilet visibility by painting the wall behind it or installing a floor surface in a contrasting color around the toilet.
  • Using incontinence briefs can limit accidents. Depending on their other FTD symptoms, the person diagnosed may resist wearing incontinence briefs, so care partners may have to be creative: replace the contents of their underwear draw with the briefs or explain that they have been prescribed by their doctor.
  • Have the person diagnosed wear clothing that is easier for them to remove when the urge to use the bathroom arises, particularly if FTD is deteriorating their fine motor skills. For example, they can wear pants with elastic waistbands rather than pants with buttons.

Accidents Will Happen

While the above strategies can help to reduce the frequency of accidents, they may still happen. Accidents are not merely messy – they can, potentially leading to infections.  Consider use of incontinent products such as Depends or sanitary pads. Keep on hand nitrile gloves, towels (paper or cloth), wet wipes, soap (hand sanitizer will work in a pinch), and disinfecting spray or wipes. Finally, when out of the house, toilet before leaving and bring a second set of clothing and extra supplies in a plastic bag; you can use the empty bag to store any soiled clothes.

People living with an FTD diagnosis may exhibit an involuntary grasp reflex, making clean-up difficult. Care partners can hand a rolled towel or other small object to the person diagnosed so they have something to grab besides their care partner.

Whether they occur in the home or in public, episodes of incontinence can be embarrassing for the person diagnosed, contributing to depression and feelings of social isolation, both of which are already common in FTD. Care partners therefore should try to remain calm and empathic. But accidents are inevitable. Give yourself grace if you become frustrated. And be sure to reach out to an AFTD support group or the AFTD HelpLine for additional advice, information, or words of encouragement.

To learn more about incontinence management, read Issue #10 of AFTD’s “Partners in FTD Care“. You can also receive additional guidance from the books “The 36-Hour Day,” by Nancy L. Mace, MA, and Peter V. Rabins. MD, MPH, and “What If It’s Not Alzheimer’s?,” edited by Gary Radin and Lisa Radin.





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Can a Tau PET Tracer Aid FTD Diagnosis? Study Explores How Tracer Performs in Other Tauopathies


A study published in Science Translational Medicine explores how well the brain imaging tau PET tracer F-MK-6240 (flortaucipir) captures the presence of underlying protein clumps seen in post-mortem Alzheimer’s tissue. It explores how effectively the tracer could be used to recognize early stages of Alzheimer’s disease and detect a similar but separate disorder called primary age-related tauopathy (PART). The study results provide new insights into the tracer’s sensitivity and specificity for tau. These findings can indicate whether a tracer can be used as a “biomarker”, a readout to detect the presence or severity of a specific disease. Biomarkers are critical for accurate and early diagnosis, as well as tracking disease progression and measuring if potential treatments are working in clinical trials.

Like Alzheimer’s disease, corticobasal syndrome (CBS) and progressive supranuclear palsy (PSP), both forms of FTD, are associated with the tau protein. They are characterized by the protein’s structure being altered through the process of phosphorylation, which causes abnormal accumulations of the tau known as neurofibrillary tangles. Primary age-related tauopathy (PART) is yet another disorder which also has tau clumps but is not FTD or Alzheimer’s. Collectively, these disorders are known as “tauopathies”, but may differ between the type of tau, the amount, the location, and the types of other disrupted proteins. Thus, imaging tracers need to be tested for each disorder to see if they are useful for diagnosis, or for distinguishing between disorders.

The AFTD is dedicated to advancing biomarkers for diagnosis, The AFTD funds biomarker research, with a dedicated Biomarkers Initiative which awarded ~$5 million from 2016-2021, and a new Biomarkers Initiative starting in 2025.

Flortaucipir binds to a form of tau common in neurodegenerative diseases; by binding, the slight radiation of the tracer makes these accumulations visible to a PET scanner. While tau accumulations detected in some brain regions can contribute to a diagnosis, the lack of tau can contribute to a differential diagnosis by ruling out tauopathies. However, scientists are still uncertain if flortaucipir binding can accurately indicate the presence of tau tangles.

“We need to be cautious when using these molecular PET scans to determine eligibility for treatment, especially if treatment aims to target early stages of the disease,” lead author Keith Josephs, MD, told AlzForum.

Flortaucipir in Alzheimer’s Disease and PART

The study by Josephs and researchers from Mayo Clinic is the largest yet to combine data on flortaucipir in vivo (in a living person) and post-mortem. The study included 248 participants, including people with Alzheimer’s disease and primary age-related tauopathy (PART), as well as people without tauopathy to serve as controls.

To measure the sensitivity of flortaucipir, the researchers compared its binding to what is known as Braak staging, a clinical method used to classify the intensity of Alzheimer’s or Parkinson’s pathology. Braak staging uses numbers (one through six) to indicate where tau tangles have spread in the brain by looking at the tissue post-mortem. Higher numbers indicate advanced stages of disease.

According to the study results, flortaucipir was detected in people with tau protein tangles at Braak stages five and six but had a far weaker signal in stages four and below.  Plaques made of the amyloid protein increased the flortaucipir signal in people at lower Braak stages. In general, flortaucipir was able to identify people with higher tau levels but not those with lower levels at earlier stages of Alzheimer’s. Writing to Alzforum, researcher Rik Ossenkoppele, Ph.D., noted, “The inability of flortaucipir to detect [PART] is a very important observation because the field has been misinformed by several in vivo PET studies that have used inappropriate thresholds (i.e., too low for tau PET and too high for amyloid PET) to suggest that flortaucipir can be used to detect PART in vivo.”

Crucially, flortaucipir failed to flag tangles in participants with PART, which typically has lower tau levels than Alzheimer’s. Writing to Alzforum, researcher Rik Ossenkoppele, Ph.D., noted, “The inability of flortaucipir to detect [PART] is a very important observation because the field has been misinformed by several in vivo PET studies that have used inappropriate thresholds (i.e., too low for tau PET and too high for amyloid PET) to suggest that flortaucipir can be used to detect PART in vivo.”

The authors also investigated whether flortaucipir could discriminate PART diagnoses from controls (no neurodegenerative disease) based on the tau signals from different brain regions. It was found that while the tracer had 80% sensitivity, meaning a low chance of false positives, it only had 60% specificity, indicating a significant chance of a false negative. Further, Flortaucipir did not reliably discriminate between people with Alzheimer’s and those with early progression Alzheimer’s disease, and the authors warned this could result in people with Alzheimer’s being misdiagnosed with PART.

Josephs told Alzforum that whether other tau-based PET tracers could outperform flortaucipir is unknown. “I am not aware of any other [beta] amyloid or tau tracers that have been shown to be more sensitive to lower levels of AD pathology using autopsy-confirmed data,” he said. “More sensitive PET tracers are clearly needed.”

Flortaucipir in FTD

Previous studies have suggested that flortaucipir also has limited sensitivity and specificity to tau-based forms of FTD. In a 2019 study led by UCSF, researchers evaluated the performance of the tracer in a cohort of 45 participants with various forms of FTD, including behavioral variant FTD (bvFTD), primary progressive aphasia (PPA), CBS, PSP, and different FTD-causing gene mutations. The results of the PET scans from the FTD cohort were compared to a 53-person control group.

The study authors noted that the binding flortaucipir through the brain and the frequency matched the expected distribution in FTD disorders like nfvPPA, CBS, and a bvFTD subtype associated with tau. However, compared to the control participants, the researchers noticed a lack of significant flortaucipir binding and considerable overlap in binding patterns between participants with FTD and control participants. This suggests that flortaucipir was not able to reliably detect disease.

Researchers found that flortaucipir also has a low binding affinity to forms of tau not associated with Alzheimer’s disease and does not bind to TDP-43. However, positive signals in people whose FTD is TDP-43-based led the authors to question the tracer’s specificity.

Like Josephs, the authors of the 2019 study called for a more sensitive and specific tau tracer, though they also highlighted the potential applications of flortaucipir. When an FTD pathology can be confidently predicted based on presenting symptoms or the presence of an FTD-causing genetic mutation, the authors note that the tracer could be used to study how tau spreads in relation to the progression of symptoms.

While further studies are needed to assess the utility of flortaucipir for FTD better, researchers have demonstrated that the tracer has potential uses in studying FTD and as a differential diagnostic tool.

Are you interested in participating in a clinical trial like those mentioned above? AFTD’s Studies Seeking Participants page features trials actively recruiting people with FTD, care partners, and family members. The FTD Disorders Registry can help you keep apprised of upcoming studies and offers the chance to share your lived experience with scientists.





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January 25, 2025: Virtual Meet & Greet for MT, WY, ND, and SD


Join and learn from others who understand the FTD journey at this virtual AFTD Meet & Greet event for people in Montana, Wyoming, North Dakota, and South Dakota.

The event will take place from 11:00 a.m. to 12:00 p.m. MT on Saturday, January 25, 2025.

RSVP for this event by emailing event host Susan Meagher at [email protected]. To learn more, download the flyer.





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