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Caregiver burden in atypical dementias: comparing frontotemporal dementia, Creutzfeldt–Jakob disease, and Alzheimer's disease

Published online by Cambridge University Press:  05 October 2015

Alice Uflacker ,
Mary C. Edmondson ,
Chiadi U. Onyike  and
Brian S. Appleby
Alice Uflacker*
Affiliation:
Department of Psychiatry and Behavioral Sciences, Duke University Medical Center, Durham, N.C., USA
Mary C. Edmondson
Affiliation:
Department of Psychiatry and Behavioral Sciences, Duke University Medical Center, Durham, N.C., USA
Chiadi U. Onyike
Affiliation:
Division of Geriatric Psychiatry and Neuropsychiatry, Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, Md., USA
Brian S. Appleby
Affiliation:
Departments of Neurology, Psychiatry, and Pathology, Case Western Reserve University School of Medicine, Cleveland, OH, USA
*
Correspondence should be addressed to: Dr. Alice Uflacker, MD, Department of Psychiatry, Duke University Medical Center, DUMC 3837, Durham, NC 27710, USA. Phone: +(919) 684-2258; Fax: +(919) 684-2290. Email: [email protected].
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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.

Keywords

Alzheimer’s diseasecaregiver burdenCreutzfeldt–Jakob diseasefrontotemporal dementiayoung onset dementiaatypical dementiaprion disease
Type
Research Article
Information
International Psychogeriatrics , Volume 28 , Issue 2 , February 2016 , pp. 269 - 273
Copyright
Copyright © International Psychogeriatric Association 2015 

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