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Perceived burden among caregivers of patients with frontotemporal degeneration in the United States

Published online by Cambridge University Press:  06 November 2018

Lilah M. Besser  and
James E. Galvin
Lilah M. Besser*
Affiliation:
School of Urban and Regional Planning, Florida Atlantic University, Boca Raton, Florida, USA
James E. Galvin
Affiliation:
Charles E. Schmidt College of Medicine, Florida Atlantic University, Boca Raton, Florida, USA
*
Correspondence should be addressed to: Lilah Besser, School of Urban and Regional Planning, Florida Atlantic University, SO 44 – Office 371, 777 Glades Rd., Boca Raton, Florida 33431, USA. Phone: 561-297-0614. Email: [email protected].
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Abstract

Background:

Frontotemporal degeneration (FTD) dementia often begins before age 60 and predominantly presents as four subtypes with prominent features of language, behavior, cognition, and motor symptoms. The early onset and unique symptoms place a distinct burden on caregivers of individuals with FTD versus other dementia types, such as Alzheimer’s disease. This is the first known study to examine the domains of the FTD caregiver burden and the caregiver and patient characteristics associated with these domains.

Methods:

In 2017, 674 FTD caregivers in the United States (US) completed a web-based survey of caregiver and patient demographics, disease severity/symptoms, caregiver burden, and financial costs of caregiving. The major factors of caregiver burden (Zarit Burden Inventory) were determined using a principal axis factor analysis with varimax rotation. Multiple linear regression analyses examined caregiver and patient characteristics associated with overall burden and three major factors of burden: role strain, personal strain, and performance strain.

Results:

Increased neuropsychiatric symptoms was associated with overall caregiver burden and greater role, personal, and performance strain. Younger caregivers experienced greater overall burden and performance strain, female caregivers experienced increased role strain, and male caregivers experienced greater performance strain. Financial costs of caregiving and experiencing a caregiving crisis in the past year were associated with higher overall burden and role strain.

Conclusions:

This study suggests that the severity and sources of burden differ for caregivers of FTD patients versus patients with other dementia types. Differing predictors for each burden domain suggest targeted interventions to address the unique FTD caregiving challenges.

Keywords

frontotemporal degenerationdementiacaregiverburdencaregivingFTD
Type
Original Research Article
Information
International Psychogeriatrics , Volume 31 , Issue 8: Issue Theme: Dementia Care , August 2019 , pp. 1191 - 1201
Copyright
© International Psychogeriatric Association 2018 

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Footnotes

*

Co-author.

References

Alzheimer’s Association. (2016). 2016 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia. 12, 459–509. doi: 10.1016/j.jalz.2016.03.001.CrossRefGoogle Scholar
Armstrong, M. J. et al. (2013). Criteria for the diagnosis of corticobasal degeneration. Neurology, 80, 496–503. doi: 10.1212/WNL.0b013e31827f0fd1.CrossRefGoogle Scholar
Arthur, P. B., Gitlin, L. N., Kairalla, J. A. and Mann, W. C. (2017). Relationship between the number of behavioral symptoms in dementia and caregiver distress: what is the tipping point? International Psychogeriatrics, 30, 1099–1107. doi: 10.1017/S104161021700237X.CrossRefGoogle ScholarPubMed
Bedard, 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. Gerontologist, 41, 652–657. doi: 10.1093/geront/41.5.652.CrossRefGoogle ScholarPubMed
Bensimon, G. et al. (2009). Riluzole treatment, survival and diagnostic criteria in Parkinson plus disorders: the NNIPPS study. Brain, 132, 156–171. doi: 10.1093/brain/awn291.CrossRefGoogle ScholarPubMed
Berman, S. E. et al. (2017). Use of the quick dementia rating system (QDRS) as an initial screening measure in a longitudinal cohort at risk for Alzheimer’s disease. Journal of Alzheimer’s Disease Reports, 1, 9–13. doi: 10.3233/ADR-170004.CrossRefGoogle Scholar
Biegel, D., Sales, E. and Shulz, R. (1991). Family Caregiving in Chronic Illness: Alzheimer’s Disease, Cancer, Heart Disease, Mental Illness, and Stroke. Thousand Oaks, CA: Sage Publications.Google Scholar
Brooks, B. R., Miller, R. G., Swash, M., Munsat, T. L. World Federation of Neurology Research Group on Motor Neuron Diseases (2000). El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 1, 293–299. doi: 10.1080/146608200300079536.CrossRefGoogle Scholar
Cummings, J. L., Mega, M., Gray, K., Rosenberg-Thompson, S., Carusi, D. A. and Gornbein, J. (1994). The neuropsychiatric inventory: comprehensive assessment of psychopathology in dementia. Neurology, 44, 2308. doi: 10.1212/WNL.44.12.2308.CrossRefGoogle ScholarPubMed
Dauphinot, V. et al. (2015). Risk factors of caregiver burden among patients with Alzheimer’s disease or related disorders: a cross-sectional study. Journal of Alzheimer’s Disease, 44, 907–916. doi: 10.3233/JAD-142337.CrossRefGoogle ScholarPubMed
Diehl-Schmid, J. et al. (2013). Caregiver burden and needs in frontotemporal dementia. Journal of Geriatric Psychiatry and Neurology, 26, 221–229. doi: 10.1177/0891988713498467.CrossRefGoogle ScholarPubMed
Galvin, J. E. (2015). The quick dementia rating system (QDRS): a rapid dementia staging tool. Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring, 1, 249–259. doi: 10.1016/j.dadm.2015.03.003.Google ScholarPubMed
Galvin, J. E., Howard, D. H., Denny, S. S., Dickinson, S. and Tatton, N. (2017). The social and economic burden of frontotemporal degeneration. Neurology, 89, 2049–2056. doi: 10.1212/WNL.0000000000004614.CrossRefGoogle ScholarPubMed
Hébert, R., Bravo, G. and Préville, M. (2000). Reliability, validity and reference values of the Zarit Burden Interview for assessing informal caregivers of community-dwelling older persons with dementia. Canadian Journal on Aging, 19, 494–507. doi: 10.1017/S0714980800012484.CrossRefGoogle Scholar
Hsieh, S. et al. (2016). The evolution of caregiver burden in frontotemporal dementia with and without amyotrophic lateral sclerosis. Journal of Alzheimer’s Disease, 49, 875–885. doi: 10.3233/JAD-150475.CrossRefGoogle ScholarPubMed
Hurd, M. D., Martorell, P., Delavande, A., Mullen, K. J. and Langa, K. M. (2013). Monetary costs of dementia in the United States. The New England Journal of Medicine, 368, 1326–1334. doi: 10.1056/NEJMsa1204629.CrossRefGoogle ScholarPubMed
Kaizik, C. et al. (2017). Factors underpinning caregiver burden in frontotemporal dementia differ in spouses and their children. Journal of Alzheimer’s Disease, 56, 1109–1117. doi: 10.3233/JAD-160852.CrossRefGoogle ScholarPubMed
Kamiya, M., Sakurai, T., Ogama, N., Maki, Y. and Toba, K. (2014). Factors associated with increased caregivers’ burden in several cognitive stages of Alzheimer’s disease. Geriatrics & Gerontology International, 14, 45–55. doi: 10.1111/ggi.12260.CrossRefGoogle ScholarPubMed
Kandiah, N. et al. (2016). Cost related to dementia in the young and the impact of etiological subtype on cost. Journal of Alzheimer’s Disease, 49, 277–285. doi: 10.3233/JAD-150471.CrossRefGoogle Scholar
Knopman, D. S. and Roberts, R. O. (2011). Estimating the number of persons with frontotemporal lobar degeneration in the US population. Journal of Molecular Neuroscience, 45, 330–335. doi: 10.1007/s12031-011-9538-y.CrossRefGoogle ScholarPubMed
Leggett, A. N., Zarit, S., Taylor, A. and Galvin, J. E. (2011). Stress and burden among caregivers of patients with Lewy body dementia. Gerontologist, 51, 76–85. doi: 10.1093/geront/gnq055.CrossRefGoogle ScholarPubMed
Liu, S. et al. (2017a). The effects of behavioral and psychological symptoms on caregiver burden in frontotemporal dementia, Lewy body dementia, and Alzheimer’s disease: clinical experience in China. Aging and Mental Health, 21, 651–657. doi: 10.1080/13607863.2016.1146871.CrossRefGoogle Scholar
Liu, S. et al. (2017b). Caregiver burden, sleep quality, depression, and anxiety in dementia caregivers: a comparison of frontotemporal lobar degeneration, dementia with Lewy bodies, and Alzheimer’s disease. International Psychogeriatrics, 30, 1131–1138. doi: 10.1017/S1041610217002630.CrossRefGoogle ScholarPubMed
Mesulam, M. M. (2003). Primary progressive aphasia—a language-based dementia. The New England Journal of Medicine, 349, 1535–1542. doi: 10.1056/NEJMra022435.CrossRefGoogle Scholar
Mioshi, E. et al. (2013). The impact of dementia severity on caregiver burden in frontotemporal dementia and Alzheimer disease. Alzheimer Disease and Associated Disorders, 27, 68–73. doi: 10.1097/WAD.0b013e318247a0bc.CrossRefGoogle ScholarPubMed
Perry, D. C. and Miller, B. L. (2013). Frontotemporal dementia. Seminars in Neurology, 33, 336–341. doi: 10.1055/s-0033-1359316.Google ScholarPubMed
Pfeffer, R. I., Kurosaki, T. T., Harrah, C. H. Jr., Chance, J. M. and Filos, S. (1982). Measurement of functional activities in older adults in the community. Journal of Gerontology, 37, 323–329. doi: 10.1093/geronj/37.3.323.CrossRefGoogle Scholar
Rascovsky, K. et al. (2011). Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia. Brain, 134, 2456–2477. doi: 10.1093/brain/awr179.CrossRefGoogle ScholarPubMed
Ratnavalli, E., Brayne, C., Dawson, K. and Hodges, J. R. (2002). The prevalence of frontotemporal dementia. Neurology, 58, 1615–1621. doi: 10.1212/WNL.58.11.1615.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Sheikh, F. et al. (2018). Prevalence of mild behavioral impairment in mild cognitive impairment and subjective cognitive decline, and its association with caregiver burden. International Psychogeriatrics, 30, 233–244. doi: 10.1017/S104161021700151X.CrossRefGoogle ScholarPubMed
Smith, K. J., George, C. and Ferriera, N. (2018). Factors emerging from the “Zarit Burden Interview” and predictive variables in a UK sample of caregivers for people with dementia. International Psychogeriatrics, 22, 1–8. doi: 10.1017/S1041610218000315.CrossRefGoogle Scholar
Snowden, J. S., Neary, D. and Mann, D. M. (2002). Frontotemporal dementia. British Journal of Psychiatry, 180, 140–143. doi: 10.1192/bjp.180.2.140.CrossRefGoogle ScholarPubMed
Uflacker, A., Edmondson, M. C., Onyike, C. U. and Appleby, B. S. (2016). Caregiver burden in atypical dementias: comparing frontotemporal dementia, Creutzfeldt-Jakob disease, and Alzheimer’s disease. International Psychogeriatrics, 28, 269–273. doi: 10.1017/S1041610215001647.CrossRefGoogle ScholarPubMed
Yee, J. L. and Schulz, R. (2000). Gender differences in psychiatric morbidity among family caregivers: a review and analysis. Gerontologist, 40, 147–164. doi: 10.1093/geront/40.2.147.CrossRefGoogle ScholarPubMed
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