Stigma, Expressed Emotion, and Quality of Life in Caregivers of Individuals with Dementia

• Published date: 01 September 2018
• Date: 01 September 2018
• Author: Jessica Maura,Ana Martinez de Andino,Marc J. Weintraub,Amy Weisman de Mamani,Caitlin A. Brown
• DOI: http://doi.org/10.1111/famp.12325

Stigma, Expressed Emotion, and Quality of Life in

Caregivers of Individuals with Dementia

AMY WEISMAN DE MAMANI*

MARC J. WEINTRAUB*

JESSICA MAURA*

ANA MARTINEZ DE ANDINO*

CAITLIN A. BROWN*

Expressed emotion (EE) is a measure of a caregiver’s critical and emotionally overinvolved

(EOI; e.g., intrusive, self-sacrificing) attitudes and behaviors toward a person with a mental

illness. Mounting evidence indicates that high levels of these critical and EOI attitudes and

behaviors (collectively termed high EE) in family members are associated with a poorer cour se

of illness for people with a range of disorders, including dementia (Nomura et al., 2005). How-

ever, less is known about factors that might trigger high EE and how high EE might impact

dementia caregivers’ own mental health. In this study we propose that caregivers who perceive

stigma from their relative’s illness may be more likely to be critical or intrusive (high EOI)

toward their relative in an attempt to control symptomatic behaviors. We further hypothesized

that high EE would partially mediate the link between stigma and quality of life (QoL) as

there is some evidence that high EE is associated with poorer mental health in caregivers

themselves (Safavi et al., 2015). In line with study hypotheses and using a sample of 106

dementia caregivers, we found that greater caregiver stigma was associated with both high

EE (for criticism and EOI) and with poorer QoL. Mediational analyses further confirmed that

high EE accounts for much of the association between stigma and poorer QoL. Study results

suggest that addressing caregiver stigma in therapy could reduce levels of high EE and indi-

rectly therefore improve caregiver QoL. Intervening directly to reduce high EE could also

improve caregiver QoL.

Keywords: Expressed Emotion; Quality of Life; Dementia; Ca regivers

Fam Proc 57:694–706, 2018

Currently 5.3 million people suffer from Alzheimer’s disease and other age-related

dementias.

1,2

If no cure or prevention is found, the prevalence is expected to triple by

2050 (Alzheimer’s Association, 2015). This illness takes a major toll not only on those

*University of Miami, Coral Gables, FL.

Correspondence concerning this article should be addressed to Amy Weisman de Mamani, Department

of Psychology, University of Miami, 5665 Ponce de Leon BlVD, Coral Gables, FL 33146. E-mail:

aweisman@miami.edu.

This study was supported by the Provost Research Award from the University of Miami. We thank the

patients and families who participated in this randomized trial.

1

Dementia refers to a variety of conditions that develop when nerve cells in the brain no longer function

properly or die off (Thies & Bleiler, 2012).

2

The Diagnostic and Statistical Manual of Mental Disorders 5th ed. (DSM-5; American Psychiatric

Association, 2013) has moved to use the term neurocognitive disorders when referring to conditions com-

monly affecting younger individuals (e.g., traumatic brain injury). However, DSM-5 continues to use the

term dementia for degenerative conditions primarily affecting older adults. This study is focused on care-

givers of individuals aged 60 years and older with neurocognitive impairment, thus, we continue to use

the term dementia in this study.

694

Family Process, Vol. 57, No. 3, 2018 ©2017 Family Process Institute

doi: 10.1111/famp.12325