Opinion Column Highlights Racial Disparities in Dementia Care and Need for Support


An opinion column published in the Los Angeles Daily News highlights healthcare-based racial disparities that often leave the Latino and Black/African American communities without proper dementia care. Author Patricia A. González-Portillo shares her family’s experiences with her father’s dementia to illustrate the gap in dementia care.

González-Portillo’s father experienced symptoms for more than 20 years, living with attention difficulties, impairments to his problem-solving, and hallucinations. Yet, despite receiving quality medical care for his diabetes and congestive heart failure, González-Portillo’s father never received treatment for his dementia symptoms.

The lived experiences of González-Portillo and many others highlight the impact these disparities have on people living with FTD. Like González-Portillo, advocate and care partner Aisha Adkins, MPA, CNP, emphasized in a 2021 Washington Post article how the gap in dementia care created significant obstacles to diagnosis for her mother, a Black woman, which required Adkins to advocate on her behalf for the answers they needed.

While getting a dementia diagnosis is difficult, especially for lesser-known diseases like FTD, González-Portillo and Adkins’ experiences underscore the steeper challenges faced by diverse groups compared to whites.  According to a research review cited by González-Portillo, there are considerable disparities in access to diagnosis and dementia care. Among other findings, the report highlighted that:

  • People from diverse groups received less optimal care than whites and experienced additional delays in diagnosis. In one study, it took Black/African Americans 11% longer and Latinos 40% longer to receive a diagnosis.
  • Diverse groups had a lower rate of prescription for anti-dementia medications.
  • Black/African Americans and Latinos were less likely to be referred for neuropsychological testing.

One of the ways disparities in dementia care can be addressed would be to include greater racial and ethnic representation when designing FTD research, suggests a 2023 research paper. Other ways they propose for eliminating disparities include developing diagnostic and monitoring tools customized for different ethnic and social groups, creating culturally tailored public awareness campaigns, and providing increased education for health care professionals.

For González-Portillo, the gap in dementia care left her family without answers about what was happening to her father, and it put an intense strain on her family. “Without knowing that her husband of 62 years lacked the cognitive capacity to understand his behavior,” wrote Gonzalez-Portillo, “Mom would say, ‘Dad has no sympathy for how I feel … his words hurt me.’ I often wonder how different Dad’s last years would have been had we known he had dementia. I have no doubt we would have better known how to handle that cruel monster that robbed Papi’s mind.”

Are you concerned about getting proper FTD care or a diagnosis? AFTD’s HelpLine is here to answer your FTD questions and support you on your journey; contact the HelpLine at 1-866-507-7222 or [email protected].





medical

Volunteer Update: AFTD Welcomes New AFTD Ambassadors


Since the AFTD Ambassador Program began in 2019, our initial cohort of volunteer leaders has grown into an enthusiastic and highly motivated group working toward a future free from FTD.

AFTD is pleased to welcome two new members to the group, bringing the program to a total of 20 Ambassadors.

Zoy Kocian | Texas

Zoy learned about AFTD after her mom was diagnosed with FTD in 2012. She began attending support group meetings with her dad that year and volunteered for her first AFTD event shortly after that. Zoy soon became committed to raising awareness about AFTD and FTD through volunteer-driven campaigns like With Love, Food for Thought, and the AFTD-Team. Her efforts led her to become an AFTD Regional Coordinator Volunteer in 2016, and while she stepped down from that role in 2019, about a year after her mother passed away, she never stopped her fundraising and awareness efforts. In 2024, after co-hosting an AFTD Meet & Greet and attending the AFTD Education Conference, Zoy decided to get more involved with FTD advocacy by becoming an AFTD Ambassador.

Shirley Gordon | New Hampshire

Photo: Shirley Gordon Shirley has been active with AFTD since 2008, when her beloved husband Mike was diagnosed with FTD. Her volunteer activities include representing AFTD at local events, hosting Food for Thought fundraisers, taking part in speaking engagements, and facilitating support groups. Shirley has also done legislative work for caregivers and is a Certified Dementia Practitioner and Caregiver Coach. In 2023, AFTD nominated Shirley for a seat on the Advisory Council on Alzheimer’s Research, Care, and Services, which was established by the federal National Alzheimer’s Project Act. Since Mike’s passing in June 2020, Shirley has dedicated herself to educating and supporting folks affected by FTD, Alzheimer’s disease, and other dementias. She is honored to represent AFTD as an Ambassador for New Hampshire, and passionately hopes that someday we will find the cure for FTD.

What is an AFTD Ambassador?

Ambassadors are volunteer leaders who represent AFTD in communities across the United States, raising awareness of FTD through networking, outreach, speaking engagements, advocacy work, and attending events on behalf of AFTD. Ambassadors also connect people affected by FTD or those working on their behalf with AFTD’s resources, information, and opportunities to get involved.

Folks interested in becoming Ambassadors are asked first to collaborate with AFTD in leading a few community awareness activities. If that goes well, Ambassadors make a two-year commitment to this volunteer leadership position, and receive the training, materials, and support they need to be effective representatives in their community. Ambassadors meet monthly with each other and AFTD leadership to discuss their work.

If you are interested in becoming an AFTD Ambassador in your state or region, please reach out to us at [email protected]!





medical

Managing a Diagnosis: Brian’s FTD Story


In 2020, when Brian Dowden was in his late 30s, he noticed changes in his cognitive abilities while preparing to take the licensing exams required by his profession. “It was supposed to be an easy test for the most part,” he said. “I started studying and immediately began to struggle. I just couldn’t retain the information.”

Eventually, Brian was dismissed from his job as an operations manager, where he oversaw case managers and financial assets. After transitioning to a new company and position, where he led a team of managers and more than 200 employees, Brian continued to struggle with meeting deadlines and remembering his coworkers’ names.

This frustrating experience motivated Brian to visit his primary care physician, who referred him to a neurologist. “I went through initial testing, and after returning six months later, my scores decreased. She recommended an MRI, which turned into me getting a PET scan and a spinal tap, and that’s when I found out.”

In 2023, Brian was diagnosed with FTD at age 45. “My neurologist gave me a packet and I filled out a card to join AFTD’s email distribution list, and that’s how I began to learn more about FTD,” he said.

As his symptoms progressed, Brian realized he needed to “downsize and minimize stress.” He sold his home in Ohio and moved to Florida to live with his mom and stepfather, Dory and Barry Walton. As Brian’s care partners they help him manage the many challenges that come with the disease. “The stuff I could do just a month ago, compared to now, is very different. It’s nice to be able to hear and read stories from others going through this.”

In addition to using AFTD’s website to learn about the disease, our Comstock Quality of Life Grant and Comstock Respite Grants have provided Brian and Dory with vital support and helped them “manage the stress and financial burden of living with FTD.”

Will you make a gift today to support people living with FTD like Brian? A donation of $500 can fund one Comstock Grant, while any amount will help improve the quality of life for those who are affected by a diagnosis, as well as drive research to a cure.

Together, we can support all on this journey. Together, we are empowered to #endFTD.



medical

AFTD and ALLFTD Collaborate on Brain Donation Video


AFTD and ALLFTD have partnered to create a brief animated video that explains the brain donation process, as well as how it helps FTD researchers and families affected by FTD.

Discussing brain donation can be difficult for families, so beginning the conversation early can provide family members with the time to consider options, share preferences, and make decisions.

Families who take part in donation programs receive a definitive diagnosis through brain autopsy, which is performed to confirm the biological causes of a person’s FTD. The results can sometimes shed light on aspects of a person’s FTD that were not previously detectable, and they may even reveal causes that were different than initially expected.

When brain samples are analyzed by the brain bank, the data from the analysis is made available to scientists through a database, which allows them to identify and procure the samples that best align with their research needs. These donated samples allow scientists to study the underlying mechanisms of different types of FTD, paving the way for new diagnostic tools and treatments.

We encourage you to share this video with friends and relatives, so you can start the conversation with a mutual understanding of the benefits of brain donation and what donation entails. If you have any questions about brain donation, contact AFTD’s HelpLine at 1-866-507-7222 or [email protected].

Additional Brain Donation Resources





medical

British/Dutch Study Discovers Role of ANG Gene Mutations in ALS-FTD


Researchers at the University of Bath in the United Kingdom and the University Medical Center Utrecht in the Netherlands have uncovered an association between an inherited genetic variant of the angiogenin (ANG) gene and ALS-FTD, according to a study published in The Journal of Pathology.

It is now recognized that a pathogenic expansion of the C9orf72 gene is the most common cause of hereditary FTD, ALS, and ALS-FTD. Over time, this understanding has evolved, and variants in several other genes have been implicated as risk factors of ALS-FTD, including ANG variants.

Normally, the ANG gene regulates proteins that help the body create new blood vessels from pre-existing ones, a process known as angiogenesis. A previous study of ANG by the authors showed that it also plays a role in protecting nerve cells from damage due in part to its ability to induce a stress response. They noted that other researchers had uncovered ANG’s role in regulating the development of stem cells into specialized cells during growth in mice and zebrafish.

The authors wanted to determine if ANG played a similar role in humans. They examined ANG’s role by growing “mini-brains” from samples contributed by a family with a history of ALS-FTD. Using genetic testing results to identify who was affected, the researchers obtained samples from two family members with a pathogenic ANG variant, and one control sample from a family member who did not. The samples were used to trigger the process of nerve cell development (called “neurogenesis”), where stem cells become specialized neurons. By analyzing the neurogenesis process through the mini-brains’ growth, the scientists could identify how the ANG variant affected the development of neurons.

The authors noticed that the stem cells affected by the ANG variant were delayed in transforming into nerve cells, which led to developmental defects when they finally became neurons. They noted physical abnormalities in neurons affected by the ANG variant, such as specific structures being disorganized in size and shape. Additionally, the altered neurons were more sensitive to wear and tear and eventual cell death due to an impaired stress response.

“This suggests nerve-cell degeneration may be primed by defects occurring during early development,” author Dr. Vasanta Subramanian told Neuroscience News. “This new discovery adds to our understanding of angiogenin and its importance in protecting us from diseases associated with aging.”

While the study sheds light on the relationship between ALS-FTD and the ANG gene, the authors note that more work is needed to detail how they contribute to the onset of the disease. Further work is also required to determine how ANG interacts with other proteins associated with ALS-FTD.

There are many different genes that can cause FTD, and while genetic testing can show if you have an FTD-linked gene, AFTD strongly recommends genetic counseling as a first step to consider if testing is the right choice for you.

Are you interested in participating in research for FTD? Join the FTD Disorders Registry, a powerful tool in the movement to create therapies for FTD that can help you keep up to date on the latest research opportunities while providing your lived experience to guide the work of researchers.





medical

Dear HelpLine: Support for Familial and Genetic FTD


Most people diagnosed with FTD have a sporadic form of the disorder, meaning there is no apparent familial history of neurodegenerative disease. However, at least 20% of people diagnosed have a genetic cause for their FTD, and in many cases, the FTD-causing genetic variant can be passed along to future generations.

Genetic FTD poses unique challenges. Family members caring for loved ones who have been diagnosed see firsthand how FTD may impact their own future, or that of a sibling or child. Additionally, some families with genetic FTD find themselves with multiple family members experiencing FTD symptoms at the same time.

Clinical trials for potential FTD treatments are making progress, and because many of those trials focus specifically on genetic FTD, more people are considering predictive genetic testing; knowing your genetic status is increasingly a prerequisite to participating in leading-edge FTD research. People not currently experiencing FTD symptoms can gain insight into their own risk of developing FTD through predictive testing. But while confirming your genetic risk may alleviate the anxiety of not knowing, it is also information that cannot be unlearned. The decision to have predictive testing is highly personal. Before testing, AFTD recommends consulting a genetic counselor who can help you decide if knowing your future risk is the right decision for you at this point in your life.

Regardless of the decision to test now or defer, the presence of FTD in one’s family presents additional concerns – which, if allowed to fester, can increase the isolation brought on by FTD. Having access to a community of people who understand your situation can be a lifeline.

For people impacted by either genetic or sporadic FTD, AFTD’s support groups offer the opportunity to connect with others who know what FTD is and how it affects families. Support groups let you talk with people who are going through similar experiences and make invaluable connections. You can cry, vent, and laugh with no judgment. Groups are safe spaces where you can be yourself and talk as much or as little as you need. You can hear from others about their experiences and learn about how they approached circumstances similar to yours.

AFTD offers numerous types of support groups, and we recently introduced two different groups specifically for those facing genetic FTD.

Our Persons at Genetic Risk Peer Support Group is for people without symptoms who have undergone predictive testing and understand that they have a confirmed genetic risk to develop FTD. Members talk about how they grapple with important life decisions and cope with the knowledge of their genetic status.

The Familial FTD Peer Support Group is for asymptomatic people who know that FTD in their family is caused by a specific gene, but for various reasons have yet to undergo genetic testing themselves, or perhaps they are weighing the option of undergoing predictive genetic testing. This group is also for those who have been tested, but have chosen to not know their results.

For more information about AFTD’s support groups, please contact the HelpLine at 1-866-507-7222 or [email protected]





medical

July 17, 2024 — FTD: The Other Dementia


AFTD Ambassador Nanci Anderson will provide an overview of FTD, along with available resources available in the Twin Cities and from AFTD.

The event will take place on July 17, 2024, from 10:30 a.m. – 11:30 a.m. CT. It will be located at the Plymouth Community Center’s Education Wing (Classroom 1C), at 14800 34th Avenue N. in Plymouth, Minn.

Download this flyer to learn more.





medical

Advocacy Update: Join AFTD in Advocating for FTD Awareness Week in All 50 States


This past May, AFTD staff and other FTD advocates traveled to New York and California to celebrate the successful passing of their respective resolutions that commemorate September 22-29 as FTD Awareness Week. Now, we need your help to support FTD Awareness Week in every state!

What Is the Difference between a Proclamation and Resolution?

Awareness proclamations and resolutions are a great way to increase FTD visibility in your town or state – and ultimately across the country. Both are formal statements issued by governing bodies, but they serve different purposes and have distinct characteristics.

A proclamation is a formal public announcement issued by an authority figure, while a resolution is an official expression of opinion adopted by a legislative body. Resolutions are typically used to give directives within government, while proclamations celebrate events or designate awareness periods.

One major difference is that resolutions are legally binding and therefore require sponsorship and a vote, while proclamations are ceremonial and do not carry the same legal weight. Both are important ways to spread awareness of FTD!

What Can I Do?

For a proclamation, you can get started by downloading AFTD’s Proclamation Toolkit and sending an email to [email protected] to let us know which city, town, or state you are seeking a proclamation from. The toolkit contains a letter template and sample proclamation language, along with step-by-step guidance on securing a proclamation in your state. Know that AFTD is here to support you and answer any questions. Be sure to take a photo and tag us on social media once your proclamation is received – we want to celebrate your success!

AFTD has also prepared a toolkit about passing resolutions. To pass a resolution in your state, you need a legislator to sponsor it in your state’s Senate or House/Assembly. This process requires more work than a proclamation, so we encourage folks to work together. AFTD is currently forming small, state-level groups of advocates to achieve more resolutions. If you are interested in joining a group in your state, contact [email protected] today!

Why Is This Important?

AFTD’s community is all too familiar with the struggles and isolation that come from the lack of broad FTD awareness. Resolutions and proclamations for FTD Awareness week help raise visibility, and foster working relationships with local and state officials. and shape public policies to improve care, supports, and respite services.

With your help, we can change the landscape of FTD awareness. Visit the AFTD Advocacy Action Center, download our toolkits, and reach out to [email protected] today to make FTD Awareness Week official where you live!

Advocacy Toolkits





medical

Delaware Passes Resolution Recognizing FTD Awareness Week 2024


Delaware became the third state to officially recognize FTD Awareness Week 2024 (September 22-29) after its Senate unanimously passed the resolution SR23 on June 27.

State Senator Kyra Hoffner sponsored and introduced the resolution to the legislative chamber, citing the story of Jeanne Cestone, one of her constituents. Ms. Cestone, who was present for the vote, is currently managing the FTD diagnosis of her husband Ralph.

“By designating this week, we aim to increase understanding [and] support for those impacted and drive research efforts,” Sen. Hoffner. “Let us unite in this cause and make a meaningful difference.”

California and New York have similarly recognized FTD Awareness Week 2024 by passing resolutions. The week coincides with World FTD Awareness Week, a yearly event organized by a global coalition of FTD-focused organizations – including AFTD – called World FTD United.

Resolutions are official expressions of opinion adopted by a legislative body. Along with proclamations, which differ by being legally nonbinding, resolutions are a tool that FTD advocates can use to bring greater awareness to FTD in their states and communities.

AFTD offers guidance on working with lawmakers to pass resolutions or proclamations that recognize FTD awareness week. Contact [email protected] for more information on how to get started.

Additionally, an upcoming AFTD webinar, to be held this July, will explain in detail how to work with legislators to pass resolutions and proclamations. Registration will open in the coming days — be sure to stay tuned to AFTD’s website and email for your chance to register.





medical

AFTD Webinar: FTD and ALS — A Collaborative Approach to Diagnosis and Care


We know of several genes that can cause hereditary FTD, ALS, and ALS with FTD, with C9orf72 the most common. Yet genetics is not the complete story, as these conditions can appear without a known genetic cause. In this AFTD Healthcare Professional Webinar, neurologists from Massachusetts General Hospital who specialize in FTD and ALS discuss diagnosis and disease management when both conditions are present in the same person. Clinicians in neurology, neuropsychiatry, neuropsychology, and geriatrics, along with those in primary care, are invited to learn more about this challenging and complex condition.

Learners will be able to:

  • Recognize hallmark symptoms for FTD and ALS.
  • Describe the diagnostic process for FTD and ALS.
  • List the most common approaches to treatment and disease management when these disorders are both present in one patient.
  • Recognize the potential of a genetic causation for FTD/ALS and how best to inform families.





medical