Exploring family stigma among caregivers of persons with Alzheimer's disease: The experiences of Israeli-Arab caregivers

AboJabel, Hanan

doi:10.1177/1471301216673920

Cited by 41 publications

(31 citation statements)

References 45 publications

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“…Similar to studies assessing family stigma in late‐onset dementia , family caregivers in our study shared experiencing different types of stigma – public, courtesy and structural stigma. When talking about the stigmatic reactions of other persons towards the person with EOD (i.e.…”

Section: Discussionmentioning

confidence: 68%

Family caregivers’ and professionals’ stigmatic experiences with persons with early‐onset dementia: a qualitative study

Werner

Shpigelman

Turgeman

2019

Scandinavian Caring Sciences

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Objectives Recently, research has focused on understanding the needs of persons with early‐onset dementia and their family caregivers who often experience stigmatic beliefs. However, to date, research has not provided a thorough and deep understanding of the stigma formation process and its implications for this population. Thus, the aim of the present study was to explore the stigma formation process as experienced by family members as informal caregivers of persons with early‐onset dementia, and professionals as formal caregivers who are involved in the development, management and provision of services. Method We conducted three focus groups with 16 participants, including spouses of a person with early‐onset dementia and professionals. The focus groups’ transcripts were analysed following a thematic analysis procedure. Results Results indicated that both family members and professionals encounter stigmatic experiences because of their association with younger persons with dementia. Lack of knowledge emerged as the main antecedent and emotional burden as the main consequence of stigma. Conclusion Stigmatic experiences emerged as a pervasive and complex phenomenon among formal and informal caregivers of persons with early‐onset dementia, suggesting the need to developing a comprehensive and integrated approach to reduce them at the individual, professional and societal levels.

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Section: Discussionmentioning

confidence: 68%

Family caregivers’ and professionals’ stigmatic experiences with persons with early‐onset dementia: a qualitative study

Werner

Shpigelman

Turgeman

2019

Scandinavian Caring Sciences

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“…The associates of PWD may also develop affiliate stigma, which refers to the internationalization of negative public views toward oneself [12]. Affiliate stigma associated with Alzheimer's disease has three key components: cognitive attributions (neglectful caregiver and punishment from God), emotional reactions (anger, fear and shame) and behavioral reactions (concealment, isolation, and not seeking help) [13]. This internalization may lead to serious consequences, such as lower self-esteem and self-efficacy, feelings of hopelessness, and poor quality of life according to the stigma studies with family caregivers of people with mental illness [14][15][16][17].…”

Section: Introductionmentioning

confidence: 99%

Association Between Family Caregiver Burden and Affiliate Stigma in the Families of People with Dementia

Chang

2020

IJERPH

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Family caregivers of people with dementia (PWD) have a heavy care burden. Affiliate stigma is the stigma internalized by individuals associated with PWD. Limited research has addressed the affiliate stigma among caregivers of PWD and its influence on caregiver burden. Thus, our study investigated the burden of caregivers of PWD and its relationship with affiliate stigma. In addition, we examined the factors related to affiliate stigma. This cross-sectional study was conducted in a general hospital in Taiwan. We recruited 270 PWD and their family caregivers from the outpatient department. Relevant demographic and clinical assessment data of the patients and caregivers were evaluated. Regression analysis was performed to examine the factors associated with affiliate stigma. In total, 23.7% of the family caregivers had depression and 37.4% had anxiety. Male caregivers had higher levels of anxiety and heavier care burdens related to affiliate stigma compared with female caregivers. Moreover, characteristics such as younger age and low levels of dependence in daily activities among PWD were associated with increased affiliate stigma. A higher family caregiver burden was related to more severe affiliate stigma. Interventions for decreasing the family caregiver burden might reduce the effect of affiliate stigma.

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“…This stigma is usually assessed from the caregiver's perspective in terms of his or her perception of courtesy stigma. For example, Abojabel and Werner (13) investigated perceived courtesy stigma by questioning caregivers of individuals with Alzheimer's disease in their qualitative study. They found negative cognitions, emotions and social distance towards the caregivers, as well as some positive emotions.…”

Section: Introductionmentioning

confidence: 99%

Public stigma towards informal caregiving in Germany: a descriptive study

Zwar

Angermeyer²,

Matschinger

et al. 2020

Aging & Mental Health

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Background. There is currently a gap in the research literature regarding the occurrence and magnitude of public stigma towards informal caregiving. However, the investigation of stigma towards informal care is highly relevant, given the negative consequences that stigmatization can have. Therefore, this study aims to investigate the public stigma towards informal caregiving for individuals older than 65 years in the German population. Methods. 1038 members of the adult population (18 years and older) living in Germany participated in an online-survey. They were sampled using a quota-system based on the German micro census data. To assess public stigma towards informal caregiving for individuals older than 65 years, the following three aspects of stigma were assessed: 1) emotional reactions (adapted version of the Emotional Reaction to Mental Illness Scale), 2) behavioral reactions (extended version of the Social Distance Scale), and 3) cognitive reactions (newly developed list of Cognitions regarding informal care). Exploratory and confirmatory factor analyses were conducted for the development and adaptation of the three instruments, and their composite reliability is provided. Results. Emotional reactions in terms of devaluing feelings and feelings of misery were low, while appreciative feelings were neither low nor high. Reported social distance was low. Agreement with cognitions towards informal care in terms of devaluing and accusative cognitions was on average low, but high regarding appreciative cognitions. Conclusions. The results show that there is stigma towards informal caregiving for older individuals (65 years and older) in terms of emotional reactions, cognitions and social distance, although the magnitude of this stigma seems to be small. Knowledge regarding the occurrence and magnitude of stigma, as well as the processes that underlie this, is needed to prevent stigmatization and its negative outcomes, or at the very least, to enable the development of support for the affected individuals.

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Exploring family stigma among caregivers of persons with Alzheimer's disease: The experiences of Israeli-Arab caregivers

Cited by 41 publications

References 45 publications

Family caregivers’ and professionals’ stigmatic experiences with persons with early‐onset dementia: a qualitative study

Family caregivers’ and professionals’ stigmatic experiences with persons with early‐onset dementia: a qualitative study

Association Between Family Caregiver Burden and Affiliate Stigma in the Families of People with Dementia

Public stigma towards informal caregiving in Germany: a descriptive study

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