Subjective Experience of Family Stigma as Reported by Children of Alzheimer’s Disease Patients

Abstract

In this study we explored the subjective experience of family stigma as reported by children of persons with Alzheimer's disease (AD). Our data indicated that family stigma in the area of AD was primarily experienced in three dimensions: caregivers' stigma, lay public's stigma, and structural stigma. We found that in all these dimensions family stigma follows a process characterized by three core elements: cognitive attributions, emotional reactions, and behavioral responses. Findings of this study highlight the profound stigma confronting caregivers of persons with AD. What emerges is a poignant picture of adult children living with stigmatic beliefs while providing care for their parents with AD. We suggest that swift steps be taken to deal with these stigmatic beliefs. Mainly, structural discrimination must end if all citizens are to receive truly fair and equitable health care services and benefits.

Experiences of stigma by association among family members of people with mental illness.

“…The closer the relationship, the less the stigma is perceived as defining the person. As such, closeness can yield reductions in stigma (Werner, Goldstein, & Buchbinder, 2010).…”

Perceptions of stigma among people affected by early- and late-onset Alzheimer’s disease

“…Feelings of loss and anticipatory grief have been shown to affect all family members, not just the primary supporter (Allen et al, 2009). Additionally, supporters may experience shame and guilt (Werner et al, 2010), highlighting the similarities in consequences for the person with Alzheimer's disease and their supporter. Feelings of shame and embarrassment have also been reported by older people with forgetfulness due to fear of dementia (Ballard, 2010).…”

How do young people ‘do’ family where there is a diagnosis of dementia?

“…The social sciences have witnessed a narrative, biographical or auto/biographical 'turn' (Riessman, 2008), particularly among researchers concerned with social justice issues seeking to give voice to hidden and 'silenced lives' (McLaughlin and Tierney, 1993;Goodson and Sikes, 2001;Plummer, 2001). Such approaches were appropriate given that we sought to explore the experiences of young people who are in a minority, whose experiences violate the normal order of life events, and who are affected by a stigmatising (Goffman, 1963) and identity-spoiling condition (Werner et al, 2010).…”