Hostname: page-component-848d4c4894-8bljj Total loading time: 0 Render date: 2024-06-26T18:02:28.704Z Has data issue: false hasContentIssue false
  • English
  • Français

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: alice.uflacker@dm.duke.edu.
Get access Rights & Permissions [Opens in a new window]

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 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Alzheimer's Association (2012). 2012 Alzheimer's disease facts and figures. Alzheimer's & Dementia, 8, 131–168. doi: 10.1016/j.jalz.2012.02.001.CrossRefGoogle Scholar
Appleby, B. S. and Lyketsos, C. G. (2011). Rapidly progressive dementias and the treatment of human prion diseases. Expert Opinion on Pharmacotherapy, 12, 1–12. doi:10.1517/14656566.2010.514903.Google Scholar
Beber, B. C. and Chaves, M. L. F. (2013). Evaluation of patients with behavioral and cognitive complaints: misdiagnosis in frontotemporal dementia and Alzheimer's disease. Dementia & Neuropsychologia, 7, 60–65.Google Scholar
Bédard, M., Molloy, D. W., Squire, L., Dubois, S., Lever, J. A. and O’Donnell, M. (2001). The zarit burden interview: a new short version and screening version. The Gerontologist, 41, 652–657.CrossRefGoogle ScholarPubMed
Boutoleau-Bretonnière, C., Vercelletto, M., Volteau, C., Renou, P. and Lamy, E. (2008). Zarit Burden Inventory and activities of daily living in the behavioral variant of frontotemporal dementia. Dementia and Geriatric Cognitive Disorders, 25, 272–277. doi:10.1159/000117394.Google Scholar
Dubois, B. et al. (2007). Research criteria for the diagnosis of Alzheimer's disease: revising the NINCDS–ADRDA criteria. The Lancet Neurology, 6, 734–746. doi:10.1016/S1474-4422(07)70178-3.Google Scholar
Folstein, M. F., Folstein, S. E. and McHugh, P. R. (1975). “Mini-mental state.” A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189–198.Google Scholar
Kaufer, D. I. et al. (2000). Validation of the NPI-Q, a brief clinical form of the Neuropsychiatric Inventory. The Journal of Neuropsychiatry & Clinical Neurosciences, 12, 233–239.CrossRefGoogle ScholarPubMed
Lee, D. R., McKeith, I., Mosimann, U., Ghosh-Nodyal, A. and Thomas, A. J. (2013). Examining carer stress in dementia: the role of subtype diagnosis and neuropsychiatric symptoms. International Journal of Geriatric Psychiatry, 28, 135–141. doi: 10.1002/gps.3799.Google Scholar
Morris, J. C. (1993). The clinical dementia rating (CDR): current version and scoring rules. Neurology, 43, 2412–2414.Google Scholar
Movement Disorder Society Task Force on Rating Scales for Parkinson's Disease (2003). The unified Parkinson's disease rating scale (UPDRS): status and recommendations. Movement Disorders, 18, 738–750.Google Scholar
Neary, D. et al. (1998). Frontotemporal lobar degeneration: a consensus on clinical diagnostic criteria. Neurology, 51, 1546–1554.Google Scholar
Parchi, P. et al. (1999). Classification of sporadic Creutzfeldt–Jakob disease based on molecular and phenotypic analysis of 300 subjects. Annals of Neurology, 46, 224–233.Google Scholar
Riedijk, S. R. et al. (2006). Caregiver burden, health-related quality of life and coping in dementia caregivers: a comparison of frontotemporal dementia and Alzheimer's disease. Dementia and Geriatric Cognitive Disorders, 22, 405–412. doi:10.1159/000095750.Google Scholar
Zerr, I. et al. (2009). Updated clinical diagnostic criteria for sporadic Creutzfeldt–Jakob disease. Brain, 132, 2659–2668. doi: 10.1093/brain/awp191.CrossRefGoogle ScholarPubMed