Quality of life and caregiver burden in familial frontotemporal lobar degeneration: Analyses of symptomatic and asymptomatic individuals within the LEFFTDS cohort

the LEFFTDS Consortium

Research output: Contribution to journalArticlepeer-review

11 Scopus citations

Abstract

Objective: The Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects evaluates familial frontotemporal lobar degeneration (FTLD) kindreds with MAPT, GRN, or C9orf72 mutations. Objectives were to examine whether health-related quality of life (HRQoL) correlates with clinical symptoms and caregiver burden, and whether self-rated and informant-rated HRQoL would correlate with each other. Methods: Individuals were classified using the Clinical Dementia Rating (CDR®) Scale plus National Alzheimer's Coordinating Center (NACC) FTLD. HRQoL was measured with DEMQOL and DEMQOL-proxy; caregiver burden with the Zarit Burden Interview (ZBI). For analysis, Pearson correlations and weighted kappa statistics were calculated. Results: The cohort of 312 individuals included symptomatic and asymptomatic individuals. CDR® plus NACC FTLD was negatively correlated with DEMQOL (r = −0.20, P =.001), as were ZBI and DEMQOL (r = −0.22, P =.0009). There was fair agreement between subject and informant DEMQOL (κ = 0.36, P <.0001). Conclusion: Lower HRQoL was associated with higher cognitive/behavior impairment and higher caregiver burden. These findings demonstrate the negative impact of FTLD on individuals and caregivers.

Original languageEnglish (US)
Pages (from-to)1115-1124
Number of pages10
JournalAlzheimer's and Dementia
Volume16
Issue number8
DOIs
StatePublished - Aug 1 2020

Funding

This work is supported by the National Institutes of Health (grants U01 AG045390, PI: Dr. Bradley F Boeve; U54 NS092089, PI: Dr. Adam L Boxer; U24 AG021886, PI: Dr. Tatiana M Foroud; and U01 AG016976, PI: Dr. Walter Anthony Kukull). informationThis work is supported by the National Institutes of Health (grants U01 AG045390, PI:?Dr.?Bradley F Boeve; U54 NS092089, PI: Dr. Adam L Boxer; U24 AG021886, PI: Dr. Tatiana M Foroud; and U01 AG016976, PI: Dr. Walter Anthony Kukull).We extend our appreciation to Drs. John Hsiao and Dallas Anderson from the National Institute on Aging, Drs. Marg Sutherland and Codrin Lungu from the National Institute of Neurological Disorders and Stroke, the staff of all centers, and particularly to our individuals and their families for their participation in this protocol.

Keywords

  • C9orf72
  • GRN
  • MAPT
  • TDP-43
  • frontotemporal dementia
  • quality of life
  • tau

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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