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

Abstract

Providing care to persons with Alzheimer's disease poses challenges for spouses and adult children, including experiencing stigmatic beliefs towards themselves—i.e., family stigma. Drawing on the frameworks of ethnicity and stigma and ethnicity and dementia, the current study explored stigmatic experiences among Israeli Arab family caregivers of a person with Alzheimer's disease. Three focus groups with 20 caregivers (adult children and spouses) of persons with Alzheimer's disease were conducted. Data were analyzed using theory-led thematic analysis. Caregivers reported experiencing family stigma in two dimensions: public and affiliate stigma, in both the existence of an attribution process in which cognitive stereotypes elicit negative and positive emotions which in turn provoke behavioral attributions, was evident. Family stigma was found to be a discernible feature of everyday reality among Israeli Arab caregivers of persons with Alzheimer's disease and stress the importance of developing management strategies that are tailored to the socio-cultural characteristics of the caregivers.

Keywords

Arab culture dementia ethnic minorities informal caregivers stigma

Introduction

In the last decade, research in the area of stigma and Alzheimer's disease (AD) has moved from anecdotally based research studies to empirically based studies. A recent systematic review (Werner, 2014), covering research published between 1990 and 2012, identified a total of 48 studies on the topic, with 40 studies published between 2000 and 2012. Half of the studies identified in this review dealt with courtesy stigma.

Courtesy stigma or stigma by association is defined as the stigma experienced by individuals because of their close association with a person with a stigmatizing feature (Moses, 2014). Family stigma is a specific case of stigma by association, and is defined as the stigma experienced by individuals because of being associated with a relative with a stigmatic mark (Larson & Corrigan, 2009). Recently, Mak and Cheung (2008) differentiated the stigmatic perceptions of the public about family caregivers (i.e., courtesy stigma) and the internalization of these perceptions, which has been called affiliate stigma. Affiliate stigma can therefore be conceptualized as self-stigmatization experienced by those associated with a marked person.

Although still not abundant, the literature in the area of family stigma and AD shows three lines of research. The first line of research deals with the formative process and characteristics of family stigma and shows that, similar to courtesy stigma in mental illness (Mak & Cheung, 2008), family stigma in the area of AD follows an attribution process characterized by three core elements: cognitive attributions (including the severity of the disease, the aesthetic appearance of the person with AD, and perceptions of dangerousness); emotional reactions, including positive emotions (such as compassion and sorrow) and negative emotions (such as shame, embarrassment and guilt); and behavioral responses (such as decreased caregiving and concealment) (Werner, Goldstein, & Buchbinder, 2010). Moreover, AD family stigma was found to include three main dimensions: public family stigma, caregiver or affiliate family stigma, and structural stigma (Werner et al., 2010).

The second line of research examines the consequences of AD family stigma. This body of knowledge shows AD family stigma to be associated with considerable negative consequences such as increased caregiver burden (Batsch & Mittelman, 2012; Kahn, Wishart, Randolph, & Santulli, 2016; Werner, Goldstein, & Heinik, 2011), caregiving stress (Navab, Negarandeh, Peyrovi, & Navab, 2013; Sun, 2014), social isolation (Allen, Oyebode, & Allen, 2009; Stoke, Combes, & Stokes, 2014), and decreased help seeking (Xiao, Habel, & De Belis, 2015).

Drawing on the framework of ethnicity and stigma (Knifton, 2012; Yang et al., 2007), specific literature on differences about dementia prevalence rates between ethnic groups (Chin, Negash, & Hamilton, 2011), findings regarding differences in cultural perceptions of dementia (Cipriani & Borin, 2015; La Fontaine, Ahuja, Bradbury, Phillips, & Oyebode, 2007), and ethnic differences in informal caregiving experiences (Daker-White, Beattie, Gilliard, & Means, 2002; Dilworth-Anderson, Williams, & Gibson, 2002; Janevic & Connell, 2001; Mukadam, Cooper, & Livingston, 2011), the third line of study in the area of stigma and AD concentrated on examining the topic among ethnic minorities. Overall, these studies showed that first-degree relatives of persons with dementia pertaining to ethnic minorities report stigmatizing views about the disease (Liu, Hinton, Tran, Hinton, & Barker, 2008; Woo, 2015), mostly because of cultural beliefs, such as the fear of “losing face” among Chinese caregivers (Liu et al., 2008; Miller & Guo, 2000). Although not referring specifically to family stigma, a recent study conducted among 23 Korean American family caregivers of persons with dementia also found stigmatic beliefs and misconceptions about dementia to be based mainly on culturally based folk wisdom (Casado, Lee, Hong, & Hong, 2015). Finally, Xiao et al. (2015), in a qualitative study including six Vietnamese Australian family caregivers, showed that family stigma was associated with labeling persons with AD as “crazy”.

Despite the importance of these studies, because of their qualitative methodology, and especially since stigma has been defined as a culturally based concept (Liu et al., 2008; Woo, 2015, Xiao et al., 2015), their findings cannot be generalized to all ethnic minorities in different societies. Moreover, the few studies examining family stigma among ethnic minorities until now were not guided by a conceptual framework regarding the process of stigma. Thus, the aim of the present study was to expand knowledge in the area of AD and family stigma by examining the experiences of Arab spouses and adult children caregivers in Israel. The study was guided by the assumption of an attribution process as described above, and as was found in our previous study about family stigma among Jewish adult children caring for persons with AD (Werner et al., 2010).

Israel is a multiethnic society, comprised of Israeli Jews, followed by Israeli Arabs, mostly Muslims with smaller numbers of Arab Christians in addition to Druze, Circassians, and others (Israel Bureau of Statistics, 2013). A recent review regarding AD among the Arab population in Israel (Werner, Friendlander, & Inzelberg, 2015) showed some interesting findings. First, the prevalence of AD among members of the Arab population is relatively high, and even higher than in societies with a similar education and literacy profile, such as India, Taiwan, Egypt, and other countries. Second, compared to the Jewish population, low levels of objective and perceived knowledge were found, as well as increased levels of public stigma (Cohen, Werner, & Azaiza, 2009), stressing the importance of expanding the study of stigma within this population.

Methods

Focus groups were conducted with informal caregivers (spouses and adult children) of persons with AD. This method was selected because of the exploratory and sensitive character of the study and because focus groups create a shared space for group discussions. In addition, this method allowed participants to expand the scope of the topic (Krueger & Casey, 2009).

Participants

A convenience sampling technique was used. Inclusion criteria were: (a) being the main informal caregiver (i.e., providing ongoing emotional and instrumental care and assistance without pay) for an elderly person with AD or other type of dementia; and (b) being an Arab speaker.

A total of 20 family caregivers participated in the study. The majority were female (n = 18), adult children (n = 14), married (n = 12). Seventeen of the participants were Muslim and the rest were Christian. Their mean age was 54.0 (SD = 10.2; range = 38–70), and they had an average of 10.5 (SD = 3.5, range = 4–15) years of education. Fifteen of the participants reported having an average income and the rest reported having an income below average. The participants were involved in the caring of their relatives for an average of 3.9 (SD = 1.1, range = 1–7) years, providing an average of 36.8 (SD = 7.0) weekly caregiving hours. Participants reported that their relatives had a diagnosis of AD for an average of 4.2 years (SD = 1.3).

Procedure

Participants were recruited from villages and cities in the northern part of Israel, using three main sources: support groups organized by the Israeli Alzheimer's Association, social workers working with this population at the Welfare Office and personal knowledge. Focus groups were conducted until saturation of new information was reached (Krueger & Casey, 2009). The first two focus groups were conducted with seven participants each. Afterwards, to ensure that no new information was missed, one additional focus group session with six participants was held after theoretical saturation was estimated. All focus group participants were asked to complete a short questionnaire, including demographic and caregiving information. The average length of the meetings was 50 minutes. The focus groups were conducted in Arabic by a group facilitator, skilled and experienced in conducting focus groups, and accompanied by one of the researchers. Focus groups were held in quiet public places such as a room at the local school or at the local community center. Group interviews were audio taped and transcribed.

The study protocol was approved by the Ethics Committee of the University of Haifa, and all participants signed informed consent forms prior to their participation.

Question guide

According to recommended focus group methodology (Krueger & Casey, 2009), a semi-structured interview guide (see Table 1) was developed, containing key questions guided by the cognitive–emotional–behavioral conceptualization of stigma. During focus group discussions, the moderator followed the interview guide. However, she was also responsive to group dynamics and asked additional questions, to obtain more in-depth information about the topics, providing enough flexibility to allow open discussions to develop among the participants.

Table 1.

Focus group question guide.

Question type	Question
Opening	Can you describe your reaction toward your relative's diagnosis?
Introduction	With whom did you share the diagnosis (institutions, relatives, neighbors)? How did they react? How do you think individuals with AD are perceived by the public? What feelings do your relative's illness or behavior illicit in you? Have you ever felt shame or embarrassment?
Key	Have the attitudes of others to you changed because of your relative's diagnosis (institutions, relatives, neighbors)? If so, how? How do you think caregivers of individuals with AD are perceived by the general public?
Ending	What obstacles and difficulties do you experience as a result of caring for your relative?

Data analysis

Theory-led thematic analysis was used (Braun & Clarke, 2006). In theory-led thematic analysis, the data are analyzed to allow for the extraction of pre-established themes, as outlined by a specific theory (Hayes, 2000)—in our case, the process of cognitive–emotional–behavioral attributions. Data were first analyzed through open coding, namely by reading every interview, line by line, to discover main themes, identify possible meanings, and define categories. In the second stage, axial coding was conducted. Categories identified in the open coding stage were discussed, along with discrepancies, until a consensus was achieved. Afterwards, selected quotations were translated into English. In each quotation, the participant's name is indicated by its first initial only, to ensure anonymity.

Results

Two main dimensions of family stigma emerged throughout the focus groups: public family stigma and affiliate family stigma. Within each of these dimensions, three core elements were identified: cognitive attributions, emotional reactions, and discriminatory behaviors (see Table 2).

Table 2.

Key dimensions and attributions of family stigma.

	Public family stigma	Affiliate family stigma
Cognitive attributions	Crazy and filthy Neglectful caregiver	Neglectful caregiver God's punishment
Emotional reactions	Negative	Negative
	Disgust	Anger
	Lack of understanding	Fear
		Shame
	Positive	Positive
	Respect	Pride and fulfillment
	Pity
Behavioral reactions	Negative	Negative
	Social distance	Concealment
	Avoidance	Isolation
		Not seeking help
	Positive
	Helping

Public family stigma

This dimension reflected the way family caregivers felt they are perceived by others because of caring for a person with AD. Interestingly, when referring to “other persons”, our participants referred mainly to neighbors and other acquaintances, rather than to closer individuals, such as family members.

Cognitive attributions

Study participants reported being the target of three main cognitive attributions or stereotypes: being perceived as crazy, unattractive or filthy, or a neglectful caregiver. The first two stereotypes seemed to stem from laypersons perceiving the caregivers as an extension of the person with AD, or as being tainted by some of the characteristics of the sick person:

“Once I was sitting with my husband in our doorway, and some children from our neighborhood were playing nearby. They stared at us and began laughing … they laughed and shouted to the other neighbors: Look, look … two old, crazy people.” (D., spouse)

In the words of another participant:

“I'm afraid other people might think that my mother's disease is contagious and they won’t take me seriously. I think they might think that everything I say is a delusion.” (H., adult child)

Similarly, our participants reported experiencing being perceived by others as dirty and unattractive, as an extension of the lack of general aesthetics and hygiene attributed to the person with AD for whom they are caring.

“People think that if my husband smells bad and doesn’t shower, then I also smell because I take care of him.” (M., spouse)

The aim of these two cognitive attributions, i.e., of others labeling the caregivers as crazy or filthy, was perceived by the participants as a way of belittling and attacking them, as expressed by one of our participants:

“In a dispute I had with one of my neighbors, she told me that I had become as crazy as my mother.” (G., adult child)

While neglect has usually been conceptualized as a discriminatory behavior (Earnshaw & Chaudoir, 2009), in our study, being labeled as neglecting the care their relatives need was perceived as the third cognitive attribution. Participants talked about being labeled as neglecting their relatives by not providing adequate instrumental care, especially in relation to their diet, their medications, and so on.

“Despite all my efforts to do as much as I can, people say that I don't care for my father adequately … that I don't feed him properly or bathe him enough … Once they told me that if I would give him his medications as needed, he wouldn’t behave as he does … ” (S., adult child)

Some of the participants noted that the stereotype of being neglectful also expanded to include emotional neglect. These participants associated this stereotype with strong feelings of being blamed for their relatives' declining health status:

“The neighbors see me as a harsh woman, as someone who doesn’t have patience for her husband; they think that because of me he is deteriorating … ” (D., spouse)

Overall, our findings showed that, regardless of their relationship to the person with AD, spouses and adult children caring for persons with AD reported experiencing being the target of other persons' negative and derogatory stereotypes because of their association with a person with AD.

Emotional reactions

The cognitive attributions described above were associated with a myriad of negative and positive emotional reactions. Participants spoke about experiencing two main negative reactions from others because of being caregivers of a person with AD—disgust and lack of understanding.

Disgust

While disgust has been frequently described as a negative feeling evoked by a person with a stigmatized condition (Taylor, 2007), including persons with AD (Werner et al., 2010), our participants reported perceiving other persons showing feelings of disgust and repulsion directly towards them, rather than towards the person with AD.

“People who are close to me, such as family members and neighbors, are disgusted by me. Several times they have refused to shake hands with me because I change my husband’s diapers.” (D., spouse)

One of the participants explained these feelings of disgust as being associated with other people’s efforts to avoid some type of ‘contamination’, which could be passed on from the person with AD through the caregiver.

“When people come to our home, they refuse to eat; they don't even want to drink a cup of coffee if I'm the one preparing it … they are disgusted by me because I take care of my father.” (S., adult child)

Lack of understanding

Many statements were made by the participants regarding other people’s lack of understanding about their role and efforts as caregivers of persons with AD.

“People … don't understand how difficult it is to care for a person with AD, and all by myself … they don't understand that I'm doing my best, but (dealing with) the symptoms of the disease is very difficult … I'm only human, and ultimately I cannot do magic … I understand that they don't want to support or help me … the only thing I ask is for them to try and understand me …” (M., spouse)

Feelings of a lack of understanding were frequently accompanied by feelings of a lack of gratitude, as reflected in the words of one of the participants:

“People don't understand and don't appreciate me or what I do. They don't give me even an ounce of support.” (S., adult child)

In sum, the various negative feelings our participants perceived from others were strong and pervasive. They mostly reflected how caregivers were the target of emotional reactions elicited by characteristics of the disease or of the stigmatized person.

Together with these negative feelings, our participants also reported receiving positive emotional reactions from others. The main positive feelings reported were respect and pity.

Respect

Many participants, such as N. and R. below, conveyed their experience of being treated by others with respect and dignity because of their role as caregivers. Being treated with respect was conveyed in the way others expressed appreciation and admiration for their hard work, as caregivers of a person with AD:

“Family members and neighbors have a lot of respect for me … they tell me that what I'm doing for my father is enough for me to go to heaven.” (N., adult child)

“People take their hats off to me because I'm taking care of my wife. I can see they look at me with respect and appreciation.” (E., husband)

Pity

Similar to studies assessing courtesy stigma in mental illnesses (Corrigan, Watson, & Miller, 2006), as well as in AD (Werner et al., 2010), caregivers in our study reported experiencing feelings of pity expressed by others because of their caregiving role.

“People tend to pity me a lot … they see and feel how hard it is to care for a person with AD.” (A., adult child)

As can be seen in the above quotation, feelings of pity were associated with a sense of empathy and understanding of the instrumental difficulties associated with being a caregiver of a person with AD. However, other participants referred to others’ expressions of pity as being closer to expressions of mercy and compassion, rather than empathy.

“People started asking … what happened to your mother? Why does she behave so strangely? And then I had to tell them that mom is sick with AD. Their reaction … the way they looked at me with pity in their eyes … as if to say: ‘You poor thing, God help you, your mother has AD and you have to care for her' … ” (G., adult child)

In sum, family caregivers of persons with AD reported experiencing a variety of emotional reactions directed at them by others, because of being a caregiver of a person with AD. These emotional reactions were associated with two main behavioral reactions, as described below.

Behavioral attributions

The study participants reported several broad behavioral reactions to the cognitive and emotional attributions ascribed to them as caregivers. These included discriminatory behaviors such as social distance and avoidance, as well as positive behaviors, such as help and support.

Social distance and avoidance

Many participants spoke about how people who were once close to them—such as friends—now tended to avoid them and limit their social interaction. As can be observed in the quotations below, some of the participants described this distancing as a slow process that occurs over time; others referred to it as a sudden change.

“Gradually … people who were close to me stopped visiting, they don't talk to me over the phone the way they used to … nobody wants to be close to me … I feel as if they’ve put a black mark on me … ” (S., adult child)

“Everybody is suddenly far away; friends … neighbors … People you’ve known for many years suddenly disappear.” (M., spouse)

Helping behavior

Together with these harsh descriptions of discrimination, positive behavioral reactions were also reported by the focus group participants. Examples of instrumental and emotional informal help and support were described, as can be observed in the quotations of some of the participants below:

“God bless my children … without them I wouldn't be able to cope with all the burden and stress. They help me a lot … they cook, feed their father, clean the house.” (M., spouse)

“Neighbors, friends and family members help me and support me emotionally.” (A., adult child)

A few of the participants also referred to help provided by formal sources, such as professionals. Emotional support, as well as informational support and help, was described:

“The social worker at the welfare office helps me a lot … she understands me and I think she gives me special treatment.” (Av., adult child)

“The social workers advise me … explain what to do … where to seek help … In addition, they give me suggestions on how to cope with my situation” (Av., adult child)

“The physician always explains what’s happening with our father and what can we expect in the future.” (N., adult child)

In sum, from the participants’ discussions in the focus groups emerged a picture of family caregivers facing difficult experiences of stigma directed at them by others, especially neighbors, friends, and family members.

The second dimension observed in our data was affiliate stigma, i.e., the internalization of these stigmatic behaviors expressed by others. In the next section, we will describe the main findings regarding affiliate stigma.

Affiliate family stigma

As already stated, affiliate stigma is defined as the internalization of public courtesy stigma. An analysis of the focus groups data revealed that while some of the attributions reported in the public courtesy stigma dimension were internalized by the participants, others were not.

Cognitive attributions

In the cognitive dimension, the only stereotype internalized by the participants was being perceived as a neglectful caregiver.

“Sometimes I think that I'm the one responsible for my husband’s deteriorating status … ” (M., spouse)

“I think I failed as a caregiver; instead of helping him, I caused his deterioration.” (S., adult child)

However, a new cognitive causal attribution was found—caregiving as God's punishment.

“I think that having to take care of my father is God's punishment … and it’s a very hard punishment.” (S., adult child)

Several of our participants referred to this punishment as a well-deserved sentence they had received from God because of sins they had committed.

“I started asking myself what I had done to deserve this punishment. Why me? Why do I have to live the rest of my life taking care of my husband, when he doesn’t even recognize me? … I think this is God's punishment for things I did in the past … ” (M., spouse)

Emotional reactions

Similar to public courtesy stigma, our participants reported internalizing a variety of negative and positive emotional attributions. The main negative emotions reported were anger, fear, and shame.

Anger

From the participants’ reports, it was evident that some of the stereotypes they perceived as being attributed to them by others provoked feelings of anger and resentment.

“People might think that I’ve caught Alzheimer’s from my father and that everything I say is also nonsense. This makes me very angry … ” (H., adult child)

Fear

Similar to findings reported about family members of persons with mental illnesses (Corrigan et al., 2006), the main reason for our participants' feelings of fear was concerns of contagion.

“Just thinking that I might have to cope with getting AD myself frightens me … sometimes, because of these thoughts, I can’t sleep at night.” (N., adult child)

“Sometimes I think that because I’m taking care of my father, I will get sick, the way he is … it’s very scary.” (R., adult child)

As can be observed, feelings of fear were expressed mainly by adult children caring for their parents.

Shame

Feelings of shame were common among the participants. They were usually expressed in reaction to caregivers' perceptions about other peoples’ attributions of responsibility.

“I feel ashamed to think I might have caused my husband's deterioration.” (M., spouse)

“The minute I meet someone, they start asking me: Did you do this, how do you take care of your father? It’s all very embarrassing … ” (S., adult child)

Together with all these reports of shame and worry, our participants also reported a positive sense of pride and fulfillment associated with their role as caregivers. These positive feelings were mainly expressed by adult children.

“I'm proud of myself; I’ve been taking care of my mother for seven years … alone … and this is very hard. It’s a very difficult disease. Someone else wouldn’t be able to do what I do, not everybody has the capabilities I have.” (Av., adult child)

“I feel honored to take care of my father.” (R., adult child)

“I feel honored and proud … I didn’t abandon my mother, not even in her worst times … I stayed by her side even during the most severe stages of the disease.” (Av., adult child)

In sum, our findings showed that a range of public courtesy attributions were internalized by our participants.

Behavioral reactions

Our participants only brought up negative behavioral responses to the cognitive and emotional attributions described. These included concealment, isolation, and a failure to seek help.

Concealment

Participants described hiding the fact that their relative is sick with AD from others. Special efforts were made to keep the secret from close acquaintances and friends.

“I wanted to keep the reality of the disease to myself; I wanted to take care of my mother without anyone knowing … I didn't share my situation [with anyone] … not even my closest friends …” (G., adult child)

Concealment efforts served some of the participants as a way of managing the stigma, as can be seen in the words of one of the participants:

“I didn’t want to talk about the topic … tell anyone that my father is sick with AD … I wanted to forget that my father is sick … I wanted to forget this period, I didn't want people to see me…” (S., adult child)

Isolation

Isolation or social withdrawal was an additional behavioral reaction reported by our participants.

“I shut myself up [at home] … I live alone with my mother …” (G., adult child)

Similar to concealment of the condition, isolation helped participants cope with the stigmatic reactions of others.

“I’ve cut off all my relationships; I don't want to have to deal with the same shameful questions and remarks all the time.” (S., adult child)

Avoiding help seeking

Avoidance of help seeking has consistently been reported as one of the main consequences of stigma (Reynders, Kerkhof, Molenberghs, & Van Audenhove, 2013; Zhan, 2004). Accordingly, participants in our focus groups reported a failure to seek help from either formal or informal sources. For some of the participants, not seeking help was a way of avoiding being labeled as crazy:

“I told myself that I prefer not to get help from anyone … not even from the social worker … I prefer doing everything by myself … I'm trying to stop other people from thinking that in the future I'll become as crazy as my mother.” (H., adult child)

For others, avoiding seeking help was a way to cope with their feelings of shame:

“I was ashamed to ask for help from anyone, not even from close family members … I was ashamed because no one really knows what AD is like.” (S., adult child)

Discussion

In this qualitative study, family stigma was found to be a discernible feature of everyday reality among Israeli Arab informal caregivers of persons with AD. Similar to our findings among Jewish caregivers (Werner et al., 2010), the results demonstrated that experiences of stigma were reported for two main dimensions: public and affiliate family stigma, and that in both dimensions cognitive, emotional, and behavioral attributions were found. However, unlike Jewish caregivers, in the current study the participants did not report experiences of structural stigma. This difference might be attributed to cultural differences related to caregiving. The Arab population in Israel is rooted in strong family values, based on the principle of filial responsibility and caregiving within the family, rather than on seeking outside help (Bergman, Bodner, & Cohen-Fridel, 2013).

Public family stigma

Participants spoke extensively about the stigmatic perceptions of others regarding their role as caregivers of a person with AD, especially about their neighbors' opinions and beliefs. This is not surprising, as neighbors have been referred to as an important source of help-seeking and support for caregivers of persons with AD (Miller & Guo, 2000; Werner, Goldstein, Segel Karpas, & Lai, 2014), especially among minorities (Lee & Smith, 2012).

Being perceived by others as ‘crazy’ and ‘filthy’ emerged as two of the main stereotypes our participants reported, largely based on beliefs of being ‘contaminated’ by the person with AD through the caregiver. In the area of mental illness, contamination has been referred to as one of the mechanisms causing family stigma, mainly among children of a stigmatized person (Corrigan et al., 2006). However, in our study both adult children and spouses of the persons with AD reported being perceived as messy and confused by association—because they were taking care of their sick relatives.

Being labeled a “neglectful caregiver” was another important stereotype our participants reported being attributed to them by others. According to our participants, these perceptions of instrumental as well as emotional carelessness were totally unrelated to the time, effort, and love they invested in caring for their relatives. The participants believed these perceptions were rooted in people’s basic lack of knowledge about caring for an individual with AD. Similar experiences were reported by family caregivers of children diagnosed with high-functioning autism (Broady, Stoyles, & Morse, 2015). Moreover, our participants reported a basic lack of understanding from others about the efforts and hard work they invest as caregivers. This is especially important since, as argued by Goffman (1963), individuals who feel they have been labeled in a manner inconsistent with their self-view, might suffer serious consequences and try to adopt various strategies to reduce these incongruences. Since our study did not concentrate on the coping mechanisms and strategies used to reduce stigma, future research is needed to further elucidate this topic. For example, future studies should examine the role of social support and religious faith as coping mechanisms for dealing with stigma in this population.

Another negative emotional reaction in the public stigma dimension was disgust. Disgust is described as a basic emotion elicited when people encounter a physical or moral impurity (Rozin, Haidt, & McCauley, 2000). In the case of our participants, they reported perceiving feelings of disgust on the part of others towards them because of caring and being in contact with a person with AD.

However, together with these negative emotional reactions, participants also perceived themselves as being the object of others’ respect and pity because of caring for a person with AD. While respect was undoubtedly a positive feeling associated with the principle of filial piety in the Arab culture (Khalaila, 2010), the perceptions and interpretations of pity were more ambiguous. While some participants referred to pity as an expression of sympathy or empathy because of their difficult situation, others referred to feelings of pity as being closer to expressions of mercy and compassion, rather than to empathy—feelings which might increase, rather than decrease, discriminatory behaviors. Similarly, ambiguity was associated with pity among family caregivers of persons with autistic spectrum disorders (Milacic-Vidojevic, Gligorovic, & Dragojevic, 2012).

Finally, participants experienced two negative and one positive behavioral reactions in the public family stigma dimension. The negative reactions were social distance and avoidance, common discriminatory behaviors reported in studies assessing family stigma in a variety of conditions (Corrigan et al., 2006; Milacic-Vidojevic et al., 2012) as well as in AD (Werner et al., 2010). The positive behavioral reaction was help-giving. Participants reported receiving important emotional and instrumental help from their informal social network as well as emotional and informational help from the formal network, especially from social workers and physicians. These strong perceptions of other laypeople and professionals' willingness to help caregivers of persons with AD, which were not found in our previous study conducted with Jewish family caregivers (Werner et al., 2010), might be related to differences in caregiving and help-seeking patterns (Werner, Goldstein, Karpas, Chan, & Lai, 2014).

Affiliate family stigma

Despite the variety of cognitive, emotional, and behavioral attributions reported by the participants in the public dimension, not all of them were internalized and experienced as affiliate family stigma. Concurrently, some new attributions emerged in this dimension.

The stereotype of being a neglectful caregiver was one of the main cognitive attributions reported by our participants. While extensive literature has examined the topic of abuse and neglect of elderly persons, in general, and of persons with AD, in particular (Cooper, Selwood, & Livingston, 2008), our study showed that it can be an important cognitive attribution, as some caregivers in our study perceived themselves as being responsible for the deteriorating status of their beloved relatives. Future studies should further examine these beliefs because they might be associated with negative feelings such as guilt, increased burden, and unsuccessful coping strategies (Martin, Gilbert, McEwan, & Irons, 2006).

Although ‘God's punishment’ has frequently been reported as a causal belief for mental illness (Gureje, Olley, Ephraim-Oluwanuga, & Kola, 2006), our findings showed that caregivers of persons with AD also reported this to be a cause for their role as caregivers. This is an important finding, especially since irrational thoughts have been found to be associated with greater burden and distress among caregivers of persons with dementia (Losada et al., 2010).

Three main negative emotions were reported by the participants in the affiliate stigma dimension: two of them—anger and shame—were clearly associated by the participants with others’ stigmatic beliefs towards the caregivers, while the third one—fear—was associated with concerns of becoming sick as a consequence of providing care for a person with AD. Feelings of anger and shame were reported in our study about family stigma among Jewish caregivers of persons with AD (Werner et al., 2010); however, they were related to characteristics of the person with AD and the disease, rather than to being a caregiver. Similarly, although fear was also reported in our previous study, it referred to other individuals’ fear of getting the disease, rather than to fear of the caregivers' contagion as in the present study. These strong emotions of concern and worry about becoming sick because of caring for a relative with AD might reflect the need to improve the level of knowledge and literacy regarding AD in the Arab population in Israel which, as stated above, was found to be relatively low (Cohen et al., 2009).

Together with these negative emotions, participants in the focus groups also reported feeling pride and fulfillment because of their caregiving role. These emotions were especially strong among adult children caring for their parents and might be a reflection of the importance of caring for older parents in the Islamic faith (Abdullah, 2016), as well as a validation of recent studies stressing the existence of positive consequences of caregiving together with the traditional negative consequences (de Labra et al., 2015).

Finally, similar to research findings in the area of affiliate stigma and mental illness (Liu et al., 2008; Mak & Cheung, 2008; Reynders et al., 2013), as well as in the area of family stigma and AD (Werner et al., 2010), concealment, social withdrawal, and avoiding seeking help were the main behavioral reactions of the participants in the current study. These stigmatic behaviors were clearly presented by the participants as different ways of dealing with the stereotypes and negative emotions associated with being a caregiver of a person with AD.

There are several limitations in this study. First, our sample included only Muslim Israeli caregivers. Findings, therefore, may not reflect the experiences of other Israeli Arab sectors, such as Christians or Druze caregivers of persons with AD.

Second, although our participants were composed of spouses as well and adult children caring for persons with AD, the small numbers did not allow us to make clear empirically based comparisons. Since some of our findings hint at differences between these two types of caregivers, future studies should further explore these trends using larger samples, especially since a recent study conducted among family members of persons with mental illness showed that familial relationship plays an important role in the manifestation of stigmatic experiences (van der Sanden, Bos, Stutterheim, Pryor, & Kok, 2015). Third, we did not gather objective data related to either the diagnosis or stage of the disease. Since previous studies suggest that stigma is associated with the severity of the disease (Werner et al., 2010), it will be interesting to assess family stigma among caregivers of persons in different stages of dementia. Finally, we acknowledge as a limitation the fact that we did not include in-depth interviews to complement the focus groups. This triangulation during data collection could have further enriched our findings. However, audio recordings, verbatim transcriptions, and direct quotes from respondents improve the study’s credibility, conformability, and dependability.

Conclusions

Despite these limitations, the present study adds important theoretical and practical implications to the area of family stigma and AD. Theoretically, it confirms the presence of public and affiliate family stigma in the area of AD, as well as the existence of an attribution process in which cognitive beliefs or stereotypes elicit negative and positive emotions, which in turn, provoke behavioral attributions. This finding further illuminates the process of stigma formation and might shed light on the correlates associated with each of the elements in this process. Moreover, our findings revealed that although our participants reported various similar stigmatic experiences to those found among Jewish caregivers, they also stated some unique and distinctive experiences, mostly associated with cultural values and faith. These findings stress the importance of assessing and minimizing family stigma by developing management strategies tailored to the caregivers’ socio-cultural characteristics.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Hanan Jabel is a doctoral student in the Department of Community Mental Health at the University of Haifa, Israel. Her research interest is primarily in the understanding of dementia, its impact, and consequences in the Arab population in Israel.

Perla Werner is a full professor at the Department of Community Mental Health at the University of Haifa, Israel. During the last years she has pioneered the conceptualization and the assessment of stigma in the area of Alzheimer's disease. She currently serves as Vice Rector of the University and has served as the Dean of the Faculty of Social Welfare and Health Sciences. Prof. Werner has published more than 200 peer-reviewed articles and received numerous competitive grants.

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