Multisite ALLFTD study modeling progressive empathy loss from the earliest stages of behavioral variant frontotemporal dementia

the ALLFTD consortium, Gianina Toller, Yann Cobigo, Patrick Callahan, Brian S. Appleby, Danielle Brushaber, Kimiko Domoto-Reilly, Leah K. Forsberg, Nupur Ghoshal, Jonathan Graff-Radford, Neil R. Graff-Radford, Murray Grossman, Hilary W. Heuer, John Kornak, Walter Kremers, Maria I. Lapid, Gabriel Leger, Irene Litvan, Ian R. Mackenzie, Maria B. PascualEliana M. Ramos, Katya Rascovsky, Julio C. Rojas, Adam M. Staffaroni, Maria C. Tartaglia, Arthur Toga, Sandra Weintraub, Zbigniew K. Wszolek, Brad F. Boeve, Adam L. Boxer, Howard J. Rosen, Katherine P. Rankin

Research output: Contribution to journalArticlepeer-review

1 Scopus citations


Introduction: Empathy relies on fronto-cingular and temporal networks that are selectively vulnerable in behavioral variant frontotemporal dementia (bvFTD). This study modeled when in the disease process empathy changes begin, and how they progress. Methods: Four hundred thirty-one individuals with asymptomatic genetic FTD (n = 114), genetic and sporadic bvFTD (n = 317), and 163 asymptomatic non-carrier controls were enrolled. In sub-samples, we investigated empathy measured by the informant-based Interpersonal Reactivity Index (IRI) at each disease stage and over time (n = 91), and its correspondence to underlying atrophy (n = 51). Results: Empathic concern (estimate = 4.38, 95% confidence interval [CI] = 2.79, 5.97; p < 0.001) and perspective taking (estimate = 5.64, 95% CI = 3.81, 7.48; p < 0.001) scores declined between the asymptomatic and very mild symptomatic stages regardless of pathogenic variant status. More rapid loss of empathy corresponded with subcortical atrophy. Discussion: Loss of empathy is an early and progressive symptom of bvFTD that is measurable by IRI informant ratings and can be used to monitor behavior in neuropsychiatry practice and treatment trials.

Original languageEnglish
Pages (from-to)2842-2852
Number of pages11
JournalAlzheimer's and Dementia
Issue number7
StatePublished - Jul 2023


  • Interpersonal Reactivity Index
  • behavioral variant frontotemporal dementia
  • clinical trials
  • cognitive empathy
  • emotional empathy
  • volumetric MRI


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