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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: lbesser@fau.edu.
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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.

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