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This study utilized a community-based, participatory research model between the Association for Frontotemporal Degeneration (AFTD) and the Education Core of the Indiana Alzheimer Disease Center. A total of 30 caregivers of persons with frontotemporal dementia (FTD) participated in 6 focus groups in 3 cities. The majority of participants were spouses of the person with FTD and had been providing care for an average of 6 years. Transcript analysis revealed 7 prominent themes: willingness to participate, when/how the issue of brain donation is raised, who initiates discussion about brain donation, who is involved in decisions about brain donation, motivation for participating in brain donation, lack of effective communication, and barriers to research participation. Caregivers demonstrated a strong desire to participate in research and contribute to advancing knowledge. The lack of effective communication between the clinicians and caregivers was a barrier to developing positive rapport, detrimentally impacting research participation.

Background: Neurophysiologic studies on human and nonhuman primates implicate an orbitofrontal-insular-striatal circuit in high-level regulation of feeding. However, the role of these areas in determining feeding disturbances in neurologic patients remains uncertain., Objective and Methods: To determine brain structures critical for control of eating behavior, we performed a prospective, laboratory-based, free-feeding study of 18 healthy control subjects and 32 patients with neurodegenerative disease. MR voxel-based morphometry (VBM) was used to identify regions of significant atrophy in patients who overate compared with those who did not., Results: Despite normal taste recognition, 6 of 32 patients compulsively binged, consuming large quantities of food after reporting appropriate satiety. All six patients who overate were clinically diagnosed with frontotemporal dementia (FTD), a disorder previously associated with disordered eating, while the nonovereaters were diagnosed with FTD, semantic dementia, progressive aphasia, progressive supranuclear palsy, and Alzheimer disease. VBM revealed that binge-eating patients had significantly greater atrophy in the right ventral insula, striatum, and orbitofrontal cortex., Conclusion: Binge eating can occur despite reported satiety and is associated with damage to a right-sided orbitofrontal-insular-striatal circuit in humans. These findings support a model in which ventral insular and orbitofrontal cortices serve as higher-order gustatory regions and cooperate with the striatum to guide appropriate feeding responses.