About FTD

Frontotemporal dementia (FTD) is a devastating form of early-onset dementia that varies in each individual. Symptoms of FTD can include, changes in personality or uncharacteristic behaviors, progressive loss of language, loss of executive function and cognitive abilities, apathy, and reduced mobility.¹⁻³ FTD causes a substantial reduction in life expectancy, and on average people with FTD die 3-13 years from diagnosis.⁴⁻⁷ It is a severely disabling disease, with patients reporting difficulties and challenges in performing daily activities, even at mild and moderate stages of the disease.⁸

 

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FTD is a leading cause of young- (or early-) onset dementia in those under the age of 65 years old.⁹ There are estimated to be approximately 20,000 to 30,000 patients living with FTD in the United States,² and more than 12,000 new cases of FTD are diagnosed each year in Europe.¹⁰ The prevalence and incidence of FTD is likely underestimated due to the difficulty in identifying and diagnosing FTD.²,⁵

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Due to the typically earlier-onset of FTD, it has significant detrimental effects on relationships, social life, occupational functioning, financial status, and quality of life.⁸,⁹ Most dementia health and social care services are tailored to older adults and patients with Alzheimer’s disease (AD) and therefore often do not meet the needs of younger FTD patients and their caregivers.⁵

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FTD can be separated into familial and sporadic FTD.¹¹ Sporadic FTD is more common.¹¹ However, FTD is highly heritable, and a strong family history is found in approximately 30-50% of all FTD patients.⁵,¹¹,¹² Mutations in progranulin (GRN) account for about 10% of all FTD cases and approximately 22% of familial cases of FTD.¹²
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Genetic testing has become more common as knowledge about genetic FTD has increased.⁴ However, there is still a pressing need to incorporate genetic counseling and appropriate testing into standard FTD patient care.⁴,⁸ Access to, and uptake of, genetic counseling and appropriate and timely testing should be improved for all patients with FTD. While there are currently no approved disease-modifying treatments for FTD, learning whether FTD is caused by a genetic mutation may help patients and clinicians to determine if they are eligible for any clinical trials.

REFERENCES

  1. Pressman PS and Miller BL. Biol Psychiatry 2014;75:574–81;
  2. Young JJ et al. Ther Adv Psychopharmacol 2018;8:33–48;
  3. Hogan DB et al. Can J Neurol Sci 2016;43 Suppl 1:S96–109;
  4. Onyike CU and Diehl-Schmid J. Int Rev Psychiatry. 2013;25(2):130–137;
  5. Riedl L et al. Neuropsychiatr Dis Treat. 2014;10:297–310; 
  6. Onyike CU. Neuroepidemiology. 2011;37:166–167; 
  7. Kansal K et al. Dement Geriatr Cogn Disord. 2016;41:109–122; 
  8. Barker MS et al. J Geriatr Psychiatry Neurol 2023;36:201–14;
  9. Hendriks S et al. JAMA Neurol 2021;78:1080–90;
  10. Logroscino G et al. JAMA Neurol 2023;80:279–86;
  11. Greaves CV and Rohrer JD. J Neurol 2019;266:2075–86;
  12. Kuang, L., et. al. Human Molecular Genetics 2020;29(4):624-634.

Caregiver Stories from the FTD Journey

Hear directly from family members of people affected by frontotemporal dementia (FTD) and learn more about their experiences from receiving a diagnosis through the progression of their loved one’s dementia.

KATIE: DEMENTIA CARE EXPERT, ADVOCATE, AND EDUCATOR

Katie became a caregiver when her husband was diagnosed with FTD at the young age of 29. Learn more about Katie’s experience supporting her husband through his FTD diagnosis while raising a toddler and her dedication to driving awareness and supporting families impacted by this devastating neurodegenerative disease.

Jacquelyn: A daughter’s FTD story

Jacquelyn’s mother’s FTD symptoms began as early as 2013, starting with insomnia, memory loss, and differences in her usual behavior. Hear from Jacquelyn as she recounts her mother’s FTD journey and how their family is navigating this devastating disease together.

Tanya: A wife’s FTD story

Tanya’s husband was a beloved partner, father, and high school history teacher, who ultimately passed away five years after his FTD diagnosis. Learn more about his FTD diagnosis, Tanya’s role as his caregiver, and her mission to raise awareness of FTD.

“It’s heartbreaking to see how fast neurodegenerative diseases, such as ALS and FTD, change the lives of patients, families and caregivers. At AviadoBio, we listen intently to this community and know their input into our work is invaluable. We extend this same compassionate approach to those we work with so everyone can collaborate by sharing their ideas and offering creative solutions.”

Farah Speer

SVP, Communications and External Relations