Initial Reports of ALLFTD Participant Internet and Social Media Usage Survey

Leah K. Forsberg, Danielle Brushaber, Hilary W. Heuer, Carly T. Mester, Meghana Rao, Masood Manoochehri, Kevin M. Nelson, Edward D. Huey, Howard J. Rosen, Adam L. Boxer, Bradley F. Boeve

Research output: Contribution to journalComment/debatepeer-review


Background: The ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) Study, is the unification of prior FTD research studies, ARTFL and LEFFTDS. ALLFTD aims to evaluate sporadic (s-) and familial (f-) frontotemporal lobar degeneration (FTLD) patients and asymptomatic family members of f-FTLD patients, characterizing the cohorts longitudinally and informing clinical trial design. Method: ALLFTD participants completed the ALLFTD-specific, Internet and Social Media (ISM) Usage Survey. This survey was created to learn more about participants’ ISM habits. The survey asks participants to report on the frequency with which they use ISM for personal reasons and contains additional questions about reasons for use and general gaming and social media habits. Result: In conjunction with their scheduled ALLFTD visit, 194 participants completed the ALLFTD ISM Usage Survey. Fifty one percent of participants identified as female. The mean age was 56.6 (SD 14.61), and the mean education level was 15.9 (SD 3.53). Most participants reported using ISM 1-5 hours per day (56.7%). Participants also reported using ISM at less common frequencies: more than 5 hours per day (12.9%), less than 1 hour per day (13.9%), weekly (3.1%), 2-3 times a week (2.1%), 2-3 times a month (2.1%), and never (9.3%).

Original languageEnglish (US)
Article numbere067727
JournalAlzheimer's and Dementia
Issue numberS8
StatePublished - Dec 2022

ASJC Scopus subject areas

  • Epidemiology
  • Health Policy
  • Developmental Neuroscience
  • Clinical Neurology
  • Geriatrics and Gerontology
  • Cellular and Molecular Neuroscience
  • Psychiatry and Mental health


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