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

Abstract

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 course of illness for people with a range of disorders, including dementia (Nomura et al., 2005). However, 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 indirectly therefore improve caregiver QoL. Intervening directly to reduce high EE could also improve caregiver QoL.

Public stigma towards informal caregiving in Germany: a descriptive study

“…In light of the growing importance and demand for informal care, especially in the German care system, these results are of significant importance. Despite the lack of research in this new field, there is evidence indicating detrimental outcomes of stigmatizing for the caregiver (18,19), as well as for the care recipient (20). Thus, even though the magnitude of stigma we found is low, further research is needed to gain a better understanding of the public stigma towards informal caregiving for older individuals, and the relevant aspects of influence.…”

“…Considering the consequences of stigma that have been shown by former research, like poorer mental health and increased critical behavior towards the care recipients (18,36), the existence of even low stigma should not be ignored. Thus, future research is needed to form a better understanding of stigma towards informal caregiving.…”

“…Extending the knowledge of the negative consequences of stigma towards informal care, Weisman de Mamani, Weintraub (20) found increased critical behavior of caregivers towards care recipients when perceiving greater stigma.…”

“…However, the investigation of stigma towards informal care is highly relevant, in view of the negative consequences of the stigmatization of informal caregivers that have been found. For example, increased depression, anxiety and loneliness in caregivers (18), and increased critical behavior of caregivers towards their care recipient (20) have been reported. Further negative consequences are possible, as indicated by the few studies conducted in this field.…”

The promise of technology in the future of dementia care

“…Today, increased understanding of the importance of personhood has helped people with dementia to remain as long as possible in their own community where family and friends, alongside community support services, manage the person's daily needs. Despite these improvements in care, however, people with dementia often continue to feel stigmatized by a society that often does not understand what it is to have a diagnosis of dementia, or what such a condition means to the person, their family, and friends 5,6 . Being treated as an 'outsider' or person of little importance encourages a sense of being an outcast of society.…”