The contribution of behavioral features to caregiver burden in FTLD spectrum disorders

the ALLFTD consortium

Research output: Contribution to journalArticlepeer-review

7 Scopus citations


Introduction: Caregivers of patients with frontotemporal lobar degeneration (FTLD) spectrum disorders experience tremendous burden, which has been associated with the neuropsychiatric and behavioral features of the disorders. Methods: In a sample of 558 participants with FTLD spectrum disorders, we performed multiple-variable regressions to identify the behavioral features that were most strongly associated with caregiver burden, as measured by the Zarit Burden Interview, at each stage of disease. Results: Apathy and disinhibition, as rated by both clinicians and caregivers, as well as clinician-rated psychosis, showed the strongest associations with caregiver burden, a pattern that was consistent when participants were separated cross-sectionally by disease stage. In addition, behavioral features appeared to contribute most to caregiver burden in patients with early dementia. Discussion: Caregivers should be provided with early education on the management of the behavioral features of FTLD spectrum disorders. Interventions targeting apathy, disinhibition, and psychosis may be most useful to reduce caregiver burden.

Original languageEnglish (US)
Pages (from-to)1635-1649
Number of pages15
JournalAlzheimer's and Dementia
Issue number9
Early online dateDec 2 2021
StatePublished - Sep 2022


  • apathy
  • behavioral symptoms
  • caregiver burden
  • dementia
  • disinhibition
  • frontotemporal dementia
  • frontotemporal lobar degeneration
  • neurodegeneration

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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