title: Caregiver burden in atypical dementias: comparing frontotemporal dementia, Creutzfeldt-Jakob disease, and Alzheimer's disease.
abstract: BACKGROUND
  Caregiver burden is a significant issue in the treatment of dementia and a known contributor to institutionalization of patients with dementia. Published data have documented increased caregiver burden in behavioral variant frontotemporal dementia (bvFTD) compared to Alzheimer's disease (AD). Another atypical dementia with high-perceived caregiver burden is sporadic Creutzfeldt-Jakob disease (sCJD), but no formal studies have assessed this perception. The aim of this study was to compare caregiver burden across atypical dementia etiologies.
  
  
  METHODS
  76 adults with atypical dementia (young-onset AD [YOAD], bvFTD, language variant FTD [lvFTD], and sCJD) were administered an abbreviated version of the Zarit Burden Interview (ZBI), Neuropsychiatric Inventory (NPI-Q), and other assessment instruments during a five-year time period at Johns Hopkins Hospital (JHH). A Cox regression model examined differences between disease categories that impact mean ZBI scores.
  
  
  RESULTS
  Mean ZBI scores were significantly different between dementia etiologies, with bvFTD and sCJD having the highest caregiver burden (p = 0.026). Mean NPI-Q caregiver distress scores were highest in bvFTD and sCJD (p = 0.002), with sCJD and bvFTD also having the highest number of endorsed symptom domains (p = 0.012). On regression analyses, an interactive variable combining final diagnosis category and NPI-Q total severity score demonstrated statistically significant differences in mean ZBI scores for sCJD and bvFTD.
  
  
  CONCLUSIONS
  This study demonstrates that bvFTD and sCJD have increased levels of caregiver burden, NPI-Q caregiver distress, total severity scores, and number of endorsed symptom domains. These results suggest that higher caregiver burden in bvFTD and sCJD are disease specific and possibly related to neuropsychiatric symptoms.
authors.affiliation: Department of Psychiatry and Behavioral Sciences,Duke University Medical Center,Durham,N.C.,USA.
authors.forename: Alice
authors.initials: A
authors.lastname: Uflacker
authors.affiliation: Department of Psychiatry and Behavioral Sciences,Duke University Medical Center,Durham,N.C.,USA.
authors.forename: Mary C
authors.initials: MC
authors.lastname: Edmondson
authors.affiliation: Division of Geriatric Psychiatry and Neuropsychiatry,Department of Psychiatry and Behavioral Sciences,Johns Hopkins University School of Medicine,Baltimore,Md.,USA.
authors.forename: Chiadi U
authors.initials: CU
authors.lastname: Onyike
authors.affiliation: Departments of Neurology, Psychiatry, and Pathology,Case Western Reserve University School of Medicine,Cleveland,OH,USA.
authors.forename: Brian S
authors.initials: BS
authors.lastname: Appleby
mesh_terms: D000203:Activities of Daily Living; D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000544:Alzheimer Disease / Q000451:nursing* / Q000523:psychology; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D007562:Creutzfeldt-Jakob Syndrome / Q000451:nursing* / Q000523:psychology; D005260:Female; D057180:Frontotemporal Dementia / Q000451:nursing* / Q000523:psychology; D006801:Humans; D008297:Male; D008875:Middle Aged; D009483:Neuropsychological Tests; D010555:Personality Inventory; D011569:Psychiatric Status Rating Scales; D012044:Regression Analysis; D012720:Severity of Illness Index; D013315:Stress, Psychological / Q000209:etiology*
keywords: Alzheimer’s disease; Creutzfeldt–Jakob disease; atypical dementia; caregiver burden; frontotemporal dementia; prion disease; young onset dementia