Public awareness is increasing the demand for FTD genetic counseling. On March 30, 2022, Bruce Willis’s family announced his diagnosis of aphasia (Moore et al., 2022). Just 10 months later, they shared that his condition had progressed, resulting in a more specific diagnosis: frontotemporal degeneration (FTD) (Willis et al., 2023). Amplified by widespread media coverage, these announcements brought FTD — a rare dementia affecting an estimated 1 in 5,000 to 10,000 individuals — into the public spotlight (Hurley et al., 2023).

Although it has not been reported whether Bruce Willis has a genetic form of FTD, his story reflects the experience of many families navigating a condition in which diagnosis often takes years. Public figures have repeatedly influenced awareness of genetic conditions. Angelina Jolie’s 2013 disclosure that she carried a pathogenic BRCA1 variant and underwent prophylactic mastectomy led to the “Angelina Jolie effect,” marked by a surge in genetic testing interest (Harvard Medical School, 2016). Similarly, Chris Hemsworth’s 2022 announcement that he carries two APOE ε4 alleles (Hemsworth, 2022), associated with increased Alzheimer’s disease risk, sparked public discussion about genetic testing for neurodegenerative conditions.

These moments of public awareness create opportunities for education and increase demand for genetic counseling and testing. In FTD, approximately 15% of affected individuals carry a causative pathogenic variant. As awareness grows, neurology clinics and genetic counselors are seeing increasing interest in testing, underscoring both the importance of genetic counseling in FTD care and the need for scalable approaches to meet growing demand.

Genetic Testing Can End the Diagnostic Odyssey in FTD

Clinical guidance in FTD has evolved significantly in recent years. An opinion piece by members of the ALS/FTD Working Group of the National Society of Genetic Counselors advocates for offering genetic counseling and testing to all individuals diagnosed with frontotemporal degeneration spectrum disorders. Multigene panel testing yields a diagnostic result in approximately 15% of cases, with pathogenic variants identified in up to 10% of individuals without an apparent family history (Dratch et al., 2025; Turner et al., 2017). Beyond clarifying etiology, genetic testing may identify candidates for clinical trials and emerging targeted therapies.

Importantly, for many families, genetic testing also ends a prolonged and distressing diagnostic odyssey. In an interview with Laynie Dratch, one caregiver described:

“After roughly two years of behavioral symptoms and one additional exhausting year of seeking medical help, genetic testing finally gave us the answer as to why my husband was struggling cognitively both at work and at home. Genetic testing offered us a firm diagnosis, which was devastating, yet it also gave us clarity and was a powerful step toward understanding, finding support, and seeking treatment options.”

In this case, testing identified a pathogenic variant in GRN, enabling enrollment in a clinical trial. The caregiver reflected, “We quickly turned our attention to choosing and screening for an interventional treatment. It gave us so much hope.”

For families facing FTD, genetic counseling involves far more than discussing inheritance patterns or test logistics. Genetic counselors help patients and their families navigate uncertainty, grief, family communication, and questions about predictive testing in the context of a progressive neurodegenerative disease. Increasing recognition of FTD and expanding therapeutic research are driving greater demand for these specialized services.

Meeting the Growing Need in FTD Care

Despite growing recognition that genetic counseling and testing should be integrated into FTD care, implementation remains challenging. Access to genetic counselors with expertise in neurology and dementia is limited, particularly in underserved areas. Appointments are time-intensive and often require detailed family histories, psychosocial assessment, discussion of neurodegenerative disease risk, and informed consent. Family histories may also be complicated by incomplete diagnoses, stigma, or relatives who were never formally evaluated, adding additional complexity to counseling.

These challenges are especially important in FTD, where timely diagnosis may influence clinical trial eligibility and care planning. However, relatively few genetic counselors specialize in neurodegenerative disease.

Innovative care models may help address this gap. Group counseling, collaborative practice with nongenetics clinicians, and telehealth have already expanded access in other areas of genetics. Now, emerging technologies, including generative artificial intelligence (AI), may offer additional opportunities to improve efficiency and scalability in neurogenetics care.

How AI Could Support Genetic Counselors

Large language models (LLMs) could reduce administrative burden and improve efficiency. Wong et al. (2025) suggest that AI may automate administrative tasks, “reclaiming valuable time for direct patient care and reducing burnout.” 

In neurology clinics, these tools could support several time-intensive aspects of care. For example, conversational voice agents could collect structured family history information prior to appointments, improving documentation and allowing counselors to focus on nuanced psychosocial discussions. 

Research by Breithaupt et al. (2025) demonstrates that voice-interactive agents can effectively elicit narratives from patients and caregivers affected by Alzheimer’s disease and related dementias, including FTD. Participants praised systematic questioning and ease of use, suggesting feasibility in real-world settings. Similarly, AI-assisted documentation tools could also summarize intake information or draft clinic notes, allowing counselors to spend more time focused on nuanced psychosocial conversations with patients and families.

Importantly, AI is not a replacement for genetic counselors. Genetic counseling in neurology often involves emotionally complex discussions about prognosis, family dynamics, caregiver burden, predictive testing, and uncertainty. These conversations require empathy, clinical judgment, and human connection. Rather, AI can augment care by streamlining workflows, expanding reach, and supporting equitable access, particularly for communities with limited resources (Wong, 2025). 

Thoughtful implementation, transparency and attention to ethical considerations will be essential. However, the potential to improve efficiency while preserving the human core of counseling is significant.

As public awareness of FTD continues to grow, so will the demand for genetic counseling and testing. The caregiver’s experience illustrates how genetic testing can transform uncertainty into clarity and open doors to research participation and support. Universal access to genetic counseling and testing in FTD is both a clinical imperative and a matter of equity. By embracing evolving clinical guidance and responsibly integrating emerging technologies, genetic counselors can help ensure that families facing neurodegenerative disease receive timely answers, informed guidance and meaningful hope.

Acknowledgements

The author would like to thank Dr. Howie Rosen, Laynie Dratch, Kristiana Salmon, Jenny Kimberly, and Weiyi Mu for their meaningful contributions and thoughtful feedback throughout the writing process. The author also extends sincere appreciation to the caregiver who generously shared her family’s experience navigating FTD.

Citations

• Breithaupt, A. G., Choi, N., Finch, J. D., Powell, J. M., Nelson, A. L., Alon, O. A., & Choi, J. D. (2025). Designing and evaluating a conversational agent for early detection of Alzheimer’s disease and related dementias. arXiv. https://arxiv.org/abs/2509.11478
• Dratch, L., Jenny, K., Salmon, K., Crook, A., Uhlmann, W. R., Fong, J. C., Goldman, J. S., Klee, V., MacLeod, R., Chaouch, A., Lucente, D. E., Mantia, S. K., Pagano, J., & Mu, W. (2025). The importance of offering genetic counseling and testing to all persons diagnosed with frontotemporal degeneration spectrum disorders. Neurology, 105(3), e213814. https://doi.org/10.1212/WNL.0000000000213814
• Harvard Medical School. (2016, December 14). The Angelina Jolie effect. Retrieved January 16, 2026, from https://hms.harvard.edu/news/angelina-jolie-effect
• Hemsworth, C. (2022). Limitless [Television series]. National Geographic; Disney+.
• Hurley, R. S., Pillai, J. A., & Leverenz, J. B. (2023). The media coverage of Bruce Willis reveals unfamiliarity with frontotemporal degeneration. Innovation in Aging, 7(9), igad125. https://doi.org/10.1093/geroni/igad125
• Moore, D. G. [@demimoore]. (2022, March 30). To Bruce’s amazing supporters… [Photograph]. Instagram. https://www.instagram.com/p/Cbu-mD7LMPg/
• Shaw, G. Neurology Today. (2026). Genetic counselors are becoming essential in neurology, but workforce and financial barriers remain. https://neurologytoday.aan.com/doi/10.1097/01.wnt.0001178540.82294.86
• Turner, M. R., Al-Chalabi, A., Chio, A., Hardiman, O., Kiernan, M. C., Rohrer, J. D., Rowe, J., & Van den Berg, L. H. (2017). Genetic screening in sporadic ALS and FTD. Journal of Neurology, Neurosurgery & Psychiatry, 88(12), 1042–1044. https://doi.org/10.1136/jnnp-2017-315995
• Willis, E. H., Moore, D. G., Willis, S. L., Willis, T. B., Willis, M. R., & Willis, E. P. (2023). A statement from the Willis family. Association for Frontotemporal Degeneration. https://www.theaftd.org/mnlstatement23
• Wong, K., Pan, V., & Caleshu, C. (2025). Generative AI: A partner for genetic counseling? Trends in Genetics. https://doi.org/10.1016/j.tig.2025.04.012

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