Turkish Adult Children as Caregivers of Parents with Alzheimer’s Disease: Perceptions and Caregiving Experiences

Methodological background

Culture includes values, norms, traditions, language, and social organization, which constitute a certain way of life for the individual members. It concerns with the subjective experience originated from shared attributions rather than the objective truth (Aranda & Knight, 1997). In that regard, interpretative phenomenological analysis (IPA) was chosen as the most suitable method for this study because this method investigates how individuals perceive and make sense of an existing phenomenon (Smith, Jarman, & Osborn, 1999). Besides, researchers preferred IPA over other qualitative methods as it takes into consideration the sociocultural context in which the target phenomenon is naturally occurring (Larkin, Watts, & Clifton, 2006).

IPA aims to provide an in-depth exploration of a topic under investigation. This method is preferably used to investigate new phenomena through obtaining natural accounts of the participants. It perceives the researcher as an active agent of the research process and necessitates “interpretative activity” (Smith et al., 1999). In order to contextualize researcher’s subjective presence, IPA necessitates a throughout reflection of researchers own personal experiences (Willig, 2008). Besides, it requires a dynamic interaction between the researcher and the participants (Jarman, Smith, & Walsh, 1997). IPA follows a bottom-up approach where the data itself created the meanings and categories independent of any existing framework (Willig, 2008). To obtain this, open-ended questions are usually asked which puts minimum restrain on participants’ explanations (Smith & Eatough, 2007). In all these respects, IPA seems well suited with our aims because we believe that culture-specific appraisals and coping styles in AD context could be best understood through interpretation of interpretative subjects (Alvesson & Skölberg, 2009). Also, we decided that researchers’ interactive stance during interviews would facilitate rich information as Turkish people appreciates relatedness over a detached communication style during interpersonal encounters (Eraslan, Yakali-Çamoğlu, Harunzade, Ergun, & Dokur, 2012). However, at the same time, the researcher (Ar) who conducted the interviews also spent a great effort not to be prescriptive and dominating over participants’ accounts.

Ethical approval

Human Ethics Committee of the Middle East Technical University (METU) approved the procedures of the present study. Additionally, I (Ar) obtained verbal consent through telephone from the directors of AD caregivers’ support groups. All participants obtained a letter informing them about the aims of the study and they provided written consent subsequently. Participants were assured of confidentiality and also provided chance to withdraw if they experience any personal discomfort. During the transcription of the interviews, researchers changed any specific information revealing the identity of the participants.

Participants

Researchers preferred to sample only ACC rather than other caregiver groups for two main reasons. First, current literature revealed that adult children and spouses experience AD caregiving differently because of the nature of the relationship with the care recipient and the developmental life stage (Bergman, Graff, Eriksdotter, Fugl-Meyer, & Schuster, 2016; Conde-Sala, Garre-Olmo, Turró-Garriga, Vilalta-Franch, & López-Pousa, 2010; Frank, 2007; Meuser & Marwit, 2001). Second, values of familism and filial piety are more pertinent to parent–child relationship rather than husband–wife relationship because of the established roles between younger and older generations in Eastern cultures (Sun et al., 2012). For these reasons, researchers initially reached 23 adult children from two nonprofit internet organizations providing informal support to AD caregivers. Purposive sampling was employed to obtain a cohesive and homogenous sample. Two participants were excluded because their care recipients died prior to participation. One participant declined to participate due to personal health-related problems. The final sample was composed of 20 ACCs of AD patients. Researchers determined the sample size as sufficient because saturation of data was achieved as consistent with IPA principles. Inclusion criteria for participation required that caregiver be adult children of an AD patient and provided at least four hours of care per day. Besides, each care recipient needed to receive an official diagnosis of AD from a neurologist or neuropsychiatrist.

The ages of the caregivers ranged between 23 and 63 with a mean of 43.3 years (standard deviation [SD] = 11.53). Of the 20 participants, 30% defined themselves belonging to high socioeconomic status (n = 6), and the remaining 55% were members of middle (n = 11) and 15% were members of low-income group (n = 3). The majority of the caregivers were women (70%) and were living together with their care recipients (55%). More than half of them had above high school education (60%) and half of them were unemployed at the time of the interview. All caregivers reported their religious orientation as Islam and received caregiving help from another person such as their healthy parents, siblings, or another professional caretaker. On average, caregivers had been providing care for about 46.37 months and for approximately 15.32 hours per day. As for care recipients, more than half of them were mothers of adult caregivers (60%). Fifty-five percent of the care recipients had severe and 45% had moderate dementia from AD, as reported by caregivers.

Procedure

Following the basic principles of IPA, we developed a semi-structured interview composed of 10 questions (see the appendix for sample of questions). We paid careful attention to construct nondirective questions so that participants could freely reflect their own experiences without any restriction or imposition from the researcher. In that sense, we tried to allow the data speak for itself (Willig, 2008). I (Ar) initially contacted the participants through online support groups. After permissions were obtained from groups’ admins, an announcement explaining the purpose of the study and call for recruitment was posted through the internet. Those caregivers interested in participation contacted the researcher. Appointments for the interviews were arranged with the caregivers who fulfilled the inclusion criteria. Most of the caregivers were interviewed in their homes since they had to provide care for their affected parent. Before each interview, the rationale of the study was explained and consent was obtained both for participation and for audio-recording of the interviews. Each interview began with demographic questions and continued with a general warm up question to establish rapport and ease the opening up of the participants (i.e., “What are the first symptoms that you noticed?”). Interviews lasted between 50 minutes to 90 minutes, with a mean of 54 minutes.

Data analysis

The current data was analyzed consistent with the IPA guidelines (Smith & Osborn, 2003; Smith et al., 1999). Initially, the first researcher transcribed audiotaped interviews verbatim and entered raw data to MaxqDA, which is a computer program used to organize and manage qualitative data. During analytic process, two-step interpretation that is called as double hermeneutics was employed by the researchers (Larkin et al., 2006). First, researchers tried to understand participants’ own appraisals and interpretations, and then they used their own understanding to contextualize each caregiver’s narrative.

Consistent with the idiographic approach employed by IPA, the first researcher read each transcript one by one to become familiarize with the accounts. While reading individual transcripts, notes were taken about the emotional content, language, or any other significant issue. These notes were used later to make sense of participants’ accounts (Touroni & Coyle, 2002). Researchers, then, identified the superordinate and subordinate themes subsequently and used conceptual key words to capture the essential meaning of each account. Upon development of new themes, transcripts were checked back to examine whether emerging themes match with the original accounts. This same analysis was repeated for each individual case and cross analysis with other cases was done until a master theme list was constructed.

To increase trustworthiness, triangulation and auditing were also employed during data analysis. A colleague with expertise in clinical psychology and qualitative analysis independently examined 10 randomly selected interviews and contributed to the formation of subordinate and superordinate themes. Research team later met together to discuss necessary changes in the coding and organization of clusters. Lastly, clusters on the master themes list were audited and research team came together to discuss the results and to reach an agreement on the final classification of categories.

As suggested by Elliott, Fischer, and Rennie (1999), we provided concrete quotations from individual transcripts for each subcategory in order to further enhance credibility and transparency in the results section. Besides, as suggested by Sandelowski (2001), in the result section, “few” is used if a theme or finding appeared in 1 to 3 transcripts, “some” if such appeared in 4 to 7 transcripts, “several” if such appeared in 8 to 10 transcripts, “many” if such appeared in 11–14 transcripts, and “most” or “majority” if such appeared in 15 or more transcripts. Yet, readers should not interpret these adjectives as generalizations to a larger sample.

Causes of disease

Majority of caregivers considered family-related stress as the primary cause of AD. Family-related stress aroused from marital discord, extended family problems, conflicts with adult children, divorce, and domestic violence. Most participants reported feeling guilty and sad because they believe that their own unsuccessful marriages or work life led their parents to have this disease. They blamed themselves for not being a better child. These caregivers at the same time expressed anger toward other family members for being the sources of family conflict and triggering their parents’ disease:

We (as children) agonized her a lot. I got divorced, my brother lost his job and my sister had a serious medical operation. She just could not bear such pain. My father also had his share. He always pressurized her. He even criticized her for the table salt. There was always a bad atmosphere at home and we were on the edges. My father’s extended family also maltreated my mother. She had to arrange everything in time. I believe that he also perpetrated violence towards her. Once her arm was broken, I think my father did that either intentionally or unintentionally.

Several caregivers stated that being apprehensive was also a major cause of the AD of their parents. Participants believed that their parents spent too much mental energy upon worrying about mundane things. As a result, they could not seize the moment and their brains just forgot working properly because all of their mental capacity was dominated by anxiety-related events and thoughts. Besides, for some of them, their affected parents are responsible for disease progression and seem resented to them for being a worrier in the past:

I think brain starts to forget when people never make peace with their problems and they always worry about past, present and future. My mother, for example, was a worrywart; she even worried about the things that happened years ago. Her mind was always busy with something. She did it to herself, in a sense. She could have been more relaxed. The best part of this disease is that she is happy now, she is always smiling.

Many caregivers perceived emotional suppression as another cause of AD. This subcategory was particularly pronounced for mothers. These caregivers defined their mothers as emotionally suppressing and self-sacrificing. Their mothers did not express negative affect not to hurt others and experience all negative emotions alone. These adult children believe that these repressed emotions accumulated over time and resulted in AD: “She was a very silent and kind person. She lived everything in private. She generally didn’t share what she was going through. She always prioritized others. I think this is the reason of her illness.”

Changes

The first subcategory was the caregiver–parent relationship change. Majority of caregivers initially expressed sadness, shock, and longing upon the loss of the past relationship with the care recipient. They reported to have lost the parental support and protection they received as a child. Almost all caregivers reported role-reversals where they became the parent of their own parents. Some caregivers described this situation with sadness and grief as it is painful to watch over their parent as if he or she were a “child.” These caregivers feel desperate because they have become just someone for their affected parent. Many caregivers also complained that they could not maintain a meaningful conversation with their parents, which led them to feel all alone:

We had a very intimate relationship before the disease. She held dear to me and could not be relieved without hearing my voice. Now she does not recognize me at all. All day she calls my name, Ahmet, Ahmet, Ahmet… She is searching for me but in fact I am just next to her (crying). Your own mother does not recognize you; that is very painful. For her I am just someone who provides her with caregiving needs. She even did not recognize that I am divorced now. I could not share it with her because she will not listen. I could not ask her for a motherly advice. I have to go through these all alone.

After ventilating negativities in the quality of relationship, almost all caregivers described a new and a more affectionate relationship with their parents. Although it was initially devastating to see their strong and protective parents to enter into a child-like state, caregivers’ motherly side started to dominate the relationship as the time passed. Caregivers also stated to have more shared memory and life experiences with their parents after the disease because they spend much more time together and they found these times very warmhearted and satisfying. Majority of caregivers stated to have a “different” form of relatedness with their parents. They saw their parents as their little child who needs compassion, affection, and protection. Some caregivers stated that their parents have also a special bonding toward them after the disease, but not toward other family members:

We always loved each other but it is different now. He is like my little child and he needs me all the time. I never want to leave him. Even when I go out leaving him to my sister, I feel very uncomfortable. We do everything together, we eat breakfast together, we sleep together, we laugh together. I just want everything to be perfect for him. I want to make him happy. I heard that these patients also become attached to one person in their lives; this is also true for my father. He also became very tied to me. He only obeys my comments but he does not want my mother and sister to interfere in anything.

The second sub-category is the change of patient’s personality. Majority of caregivers reported profound changes in patients’ personality. These changes are usually contrasting with the old traits and mostly happened in a positive direction. Few caregivers, on the other hand reported negative personality changes where their parents became more aggressive and stubborn after AD diagnosis. Several participants who reported positive changes described their parents as “cold,” “detached,” “authoritative,” “not affectionate,” “traditional,” and “normative” before the AD. They reported to feel happy with these changes because their parents became more loving, friendly, calm, and agreeable toward them. Caregivers also reported to be happy as their parents showed previously inhibited behaviors such as hugging and kissing toward them:

My mother was a real Ottoman woman before this disease. She wanted us to obey her rules unquestioningly. She was prescriptive. She always wanted me to become a traditional Turkish girl. She wanted me to cook and clean the house. I could not change the place of anything at home without her permission. Now it is just the opposite. She is calm, easy-going and happy. For example, the house is messy now. She would nag me for this before. But now she does not care. She even doesn’t go to sleep without my permission now. She wants to kiss and hug everyone. She is very cheerful.

The third subcategory is the caregivers’ psycho-social changes. Majority of caregivers reported their psychological and physical well-being has profoundly changed since the caregiving process. Caregivers felt physically exhausted and complained about sleep problems because they had to be alert to watch over their parents for 24 hours. They also stated that they are cognitively preoccupied and confused most of the time. Caregivers attributed this mental exhaustion both to the extensive caregiving responsibilities and to the constant fear that “what if I failed to notice something and something bad happens to my mom/dad?” Many caregivers also suffered from changes in their social lives such as lack of personal freedom and restricted social activities. However, they also stated that they felt anxious when they left their parents for recreational activities. They worried a lot about the bad things that might happen when they were away indicating an inflated sense of responsibility. These caregivers had a desire both for some quality time alone and being as close as possible to the affected parent. One caregiver described this conflict as follows: “Sometimes I just want to take a breath away from him but when I find a rare chance to leave I start to feel sad and anxious. I cannot stop myself from thinking what if my sister behaved badly towards him when I am away?” Majority of participants also reported changes in their family lives and dynamics. Some female caregivers reported conflicts with their husbands as their husbands resented the time and energy they spent for caregiving responsibilities. Many caregivers reported feeling exhausted due to dual-caregiving duties (e.g., caregiving for children, for other elders, for partners). One female caregiver described this situation as follows: “I felt everyone is trying to pull me apart for their needs.”

Several caregivers described also positive changes in their personality and life perspectives. They reported to become more patient, understanding, and tolerant both toward their parents and toward other people in their lives. They try to seize the moment. According to their accounts, they get satisfaction from caregiving process itself and from the relationship they established with the care recipients:

This is a very difficult process, but I also learnt a lot of things. If somebody said to me five years ago, ‘you will be locked in a house for days”, I could not believe that. You learn to be patient, you have to be patient, you have to understand what he meant by meaningless words. You have to create practical solutions while taking care of him. You have to trick him when he becomes stubborn without being angry. As you find ways, you feel happy. I am still happy and contended, I praise for every precious moment I have with him. He is my sweet, naughty child.

Coping strategies

All caregivers reported religious/fatalistic coping was the most helpful way of managing AD and caregiving responsibilities. Several caregivers believed that this disease was God’s trial in the ephemeral world. They accepted what came from God and were trying to fulfill their caregiving obligations properly in order to manage this mortal duty. Almost all caregivers stated that şükür (being grateful to God) helped them to preserve mental well-being especially during transitions (e.g., losing ability to communicate) resulting from disease progression. Even caregivers of severe stage dementia were grateful to God for their parents not being physically as bad as other patients. They believed that the situation could be worse, so they express gratitude to God for their present situation. Several caregivers also evaluated caregiving of a parent as a religious devotion. which would be rewarded in afterlife. According to them, taking a parent’s prayers is one of the most powerful good deeds in God’s eyes and would be appreciated either in mortal or immortal life. Tevekkül (doing best as one can and leaving the rest to God) was also reported by many caregivers as a religious belief. which decreases anxiety about anticipated losses associated with disease progression. Caregivers first spent a great effort to provide best care to their patients and then trusted God to prevent disease progression or even to heal their parents.

Most caregivers stated that they denied the disease-related changes initially because their parents’ present child-like state does not match with their former “strong” parental figure. Although they spend effort to reverse the disease progression at first, their belief in God helped them to accept the realities of the disease and caregiving responsibilities. These caregivers also reported that they are not willing to experience strong negative feelings toward their parents due to their religious stance. They specifically pray and perform religious rituals (e.g., salaat) to be able to relax and feel less alone:

This disease is the will of God. He (God) gives everything for a good reason, not to hurt us. We have to accept what come from him and do our best to pass this trial. The rest is in his hands. I think that looking after my father is my trial in this world. I voluntarily and fondly fulfill my duty as a child. I believe my suffering in this world would be appreciated in afterlife. Even it wouldn’t be so, I trust in Allah (God). He knows the best. My father might be in a much worse condition; he could have had a worse disease like cancer. I am grateful that he is still with me and does not suffer much.

Surprisingly, majority of caregivers complained of lack of practical and social support offered by their extended family members. They mentioned that family conflicts arouse among extended family members due to the sharing of caregiving responsibilities. These caregivers felt angry and resentful toward their relatives for their “disloyalty” and for being left alone in caregiving duties: “They are just ungrateful and undutiful to my mother. She sacrificed a lot for them but they just abandoned us. Everyone will take share on afterlife. They just piled the caregiving on me. I am not forgiving them.” Caregivers also complain about the additional burden that “lack of family harmony” puts on them. Still, several caregivers emphasized that some of their friends and relatives helped them better cope with caregiving experience especially through ventilation.

Appraisals of NHP

Most adult children are reluctant to place their parents into a formal caregiving facility. Many of them perceive NHP as an immoral and unethical act. Their consciences will not allow them to place their parents into such an institution because they perceive NHP as abandoning and ostracizing the patient:

I have never thought about it and probably I will never. I don’t find it ethical. Think about a baby who needs all your attention, you cannot also abandon that baby. I cannot throw him away just like a trash. Even I cannot tolerate his behaviors sometimes although he is my father. My conscience would not be comfortable without knowing how he is treated and feels in an institution. This issue is all about conscience.

Many caregivers strictly oppose to NHP since they perceive parental caregiving as the duty of the adult children. These caregivers believe that it is their turn to provide nurturance and protection toward their parents as their parents took care of them in their childhood. In fact, they see caregiving not only as a way of showing respect but also of love and affection:

As a child we ask the same questions over and over again and my mother never complained but answered every question of mine. She took care of me and loved me unconditionally. She sacrificed her own life for us. Now she is my child and I should accept her as she is. I feed and dress up her. I just try to show empathy. This is my obligation. But I do not do this only out of a sense of obligation, I also love her and try to show how much I care for her. This is a special bond.

Some adult children also believe that one day they could be in their parents’ position and they would expect the same attitude from their children. They aim to become a role model for their own children to maintain intergenerational aid process:

One day I could be also like my father. I would not like it, if my children left me in an institution. A person will do what she learns from her parents. I learn this from my parents and my children will learn from me.

Some of the primary caregivers express their hesitation about NHP due to the negative evaluations of NHP by their social networks and their close relatives. Although these caregivers see NHP as an acceptable option, they have to give up this alternative in order not to be criticized and reprimanded by others. They stress the importance of family ties in Turkey and explain that Turkish society could not tolerate leaving an older family member in an institution as long as his or her children and spouse are alive:

In my opinion, receiving professional help in a credible institution could be better for her. Yet, I even cannot persuade my own father! He becomes angry whenever we talk about this. He says “I will not let anyone say: Mehmet is leaving his wife.” We are not European. Family ties are weak in Europe as the children become older. They are more independent. This is not the case here; the old school people in our environment cannot tolerate this.

Several caregivers do not prefer NHP as a caregiving option because of the poor conditions of such institutions in Turkey. They are negatively influenced by the media representations in which professional caregivers display physical and psychological violence toward the elderly people. Some of these caregivers also have had previous negative experiences in such facilities. They believe that nursing home workers are “indifferent and unreliable” to provide professional care in an affectionate way:

As a caregiver, you believe that they will behave badly towards your mother. That is also what we see from the televisions and these are truths. Frankly speaking, they are inattentive even if they do not show violence. When my mother was in the nursing home, I visited her one day unexpectedly. I saw that carers did not wash her hands and face, and have fastened her in a wheelchair. I became very angry and argued with the nurses. They said if you did not like the practice in here, take your mom and go away.

Causes of disease

Although Turkish ACCs gave credit to brain abnormalities and neurological damage, they seemed to rather favor psycho-social factors in causation, stressing the importance of family conflict, excessive worry, emotional suppression, and self-sacrificing attitudes on the development of AD. This finding is consistent with the previous findings on ethnic minorities. In Western cultures, caregivers usually depict AD in terms of medically based explanations. Yet, other ethnic groups (e.g., African Americans, Latinos, Chinese Americans) use folk terms to explain disease-related symptoms such as stress, worry, pressure, wrongdoing, and family discord (Chi-Chan, 2011).

Maintaining family harmony and dignity are important cultural constructs in Turkey and imbalance in family environment may create a unique burden in such collectivistic cultures (Kağıtçıbaşı, 1999). Consistent with this, Turkish caregivers seem to put an extra emphasis on family conflict in the formation of AD symptoms. It was evident that these caregivers either blamed themselves or their relatives for their parents’ current situation. Such a self-blaming attitude might run the risk of increasing self-sacrificing behaviors during caregiving and reluctance to use formal care options in a culture where devotion to one’s parents is overvalued. Besides, caregivers’ anger toward other relatives whom they see as responsible for their parents’ disease might also create an extra stressor during caregiving process and may hinder seeking social support from these sources.

According to Turkish caregivers, worrying too much in the past also is a factor that may lead to AD. Sadness and resentment were evident in their accounts since they believed that their parents might have prevented the disease by being more relaxed and indifferent. So, in a sense they seemed to believe that AD was related to controllable factors by their parents. Caregivers’ belief that worrying too much may be a cause of AD might be accounted by the Islamic views on being worrisome. In Islam, worry is seen as devil’s business and pathological. Therefore, a faithful Muslim is expected to eliminate worrisome thoughts through worship and faith in order to preserve inner peace (Seyyar, 2010). However, this attribution might lead care recipients to be stigmatized for failing to achieve some moral and spiritual standards. Besides, caregivers might also see their parents responsible for the disease development and feel angry toward them.

Emotional suppression is another reported cause of AD in our sample. This is also a culturally appreciated construct in Eastern cultures where women are encouraged to be emotionally non-expressive and agreeable in order to settle down family disputes (Jones, 1995; Triandis & Suh, 2002). In fact, this attribution seems to remove the responsibility away from the recipient and places it on cultural expectations of emotional suppression and thus may explain the compassion expressed by the caregivers.

Changes

Consistent with the existing literature, our caregivers reported several negative changes that profoundly affected their lives in various ways. They feel sorry for the loss of communication, reciprocity, past relationship quality, past personality characteristics, and freedom to live personal lives. In fact, these negative changes are observed among all caregivers independent of their cultural background (Ablitt, Jones, & Muers, 200; Connell & Gibson, 1997; Harris et al., 2011). Still, Turkish caregivers also describe many positive changes in their lives. They seem to form a different yet more intimate relationship with their parents who have AD, which includes affection, compassion, and a new kind of reciprocity. They also perceive their parents’ child-like behaviors and personality changes as more sympathetic and satisfying than parents prior identity. Turkish caregivers also emphasize learning from caregiving experience such as becoming more patient, tolerant, and empathetic toward people and events in their lives. In fact, their accounts are consistent with the literature findings on non-Western caregivers (Connell et al., 2001; Ivey et al., 2012). Researchers claimed that positive changes usually co-exist with the negative ones (Hebbert & Schulz, 2006), and these positive effects might be more pronounced for non-Western caregivers (Hebbert & Schulz, 2006; Heo, 2014; Ivey et al., 2012). It seems that Western caregivers focus more on emotional difficulties, negative relationship changes, and reduced social interactions in their accounts (Ivey et al., 2012, Janevic & Connell, 2001). In contrast, minority caregivers (e.g., Philippines, African Americans, and Korean Americans) reported increased intimacy, self-efficacy, self-esteem, and learning from caregiving experience itself (Connell et al., 2001; Ivey et al., 2012). This difference between Western and non-Western caregivers could be attributed to the greater cultural justification of caregiving in the latter, which might provide a kind of intrinsic motivation for care provision. Besides, religious orientations of these ethnic groups might help them to accept the unchangeable aspects of this disease and orient toward more benefit-finding aspects of providing care.

Coping strategies

All caregivers in our sample reported religious/fatalistic coping as a helpful coping strategy during stressful times of caregiving. Although a lot of research has focused on coping in American caregivers, there is limited research on coping styles employed by non-Western populations that might have different impacts on caregiving outcomes (Connell et al., 2001). For example, African Americans’ spiritual beliefs that finding benefit in negative events helps them to accept the illness and display better adaptation to caregiving role (Lee & Sung, 1997; Napoles et al., 2010). They derive more satisfaction from caregiving and have greater self-efficacy beliefs when compared to Western caregivers (Lee & Sung, 1997; Napoles et al., 2010). Similarly, Chinese caregivers who have faith in Buddhism perceive the illness as fate and do not deny the realities of AD. It seems that Buddhism helps them alleviate feelings of guilt and self-blame, which is a frequently mentioned difficulty in American caregivers (Chi-Chan, 2011; Sethabouppha & Kane, 2005).

Turkish caregivers also reported Islamic beliefs such as fate, tevekkül, and şükür as protective factors in their accounts. In Islam, every malignity is given by God for a purpose. God uses unfortunate events to see whether his serves would rebel against his power or accept the fate and try to find good in bad. Specifically, God gives illnesses to the people he loves most. As long as people accept their fate and find positive aspects in suffering, they would be rewarded after life (Seyyar, 2010). It is believed that religious and fatalistic coping help Turkish ACC to reframe illness and caregiving experience in a positive way. They perceive illness as destiny given for a divine reason, which seems to facilitate greater acceptance and adaptation to this process. They try to focus on positive aspects of this experience and show their best during caregiving. Specifically, tevekkül and fate seem to help them tolerate many ambiguities inherent in AD through surrendering to God’s will and power. Their perception of caregiving as worship provides motivation for caregiving and establishing affectionate relations with the care recipient. Although risky effects were not reported in our sample, Islamic motivation for care provision might also prevent caregivers from searching for formal help and lead them to display overly self-sacrificing tendencies during care provision which may lead to burnout.

Our sample complained about lack of tangible and social support they receive from their relatives. Indeed, kinship support was posited to have a protective function for AD caregivers from collectivist cultures where family members become mobilized during stressful times (Sun et al., 2012). Consistent with this view, African American, Korean, and Korean American caregivers reported to have larger and more active extended family support systems during AD caregiving than their American counterparts. This active support system is also associated with less depression, burden, and strain (Connell et al., 2001; Napoles et al., 2010; Sun et al., 2012). Contrary to expectations, few studies addressed the lack of family support among Koreans and Korean American caregivers. It seems that conflictual family relations arising from care provision create a unique burden for them where so much emphasis is made on family ties and harmony (Ho et al., 2003; Youn et al., 1999). Our findings indicated a similar pattern, as well. The Turkish caregivers, besides being dissatisfied with their kinship support systems, also felt resentment and anger toward their relatives, which seems to put an extra strain on this sample. Herein, it is important that social policy makers and mental health professionals should not make the assumption that Eastern caregivers have more active informal support systems during informal caregiving. Besides, they should also be aware of the nonsupportive behaviors performed by family members, which might create an additional burden for AD caregivers from non-Western contexts. Such an attitude might lead to insufficient delivery of formal care programs to these groups who already have a tendency to underutilize formal community services (Chi-Chan, 2011; Connell et al., 2001).

Appraisals of NHP

There seems to be both internal and external barriers to the use of formal care services in our sample. As an internal barrier, Turkish ACC associated NHP with abandonment and neglecting the parent. NHP is a decision that opposes strictly with their cultural, familial, and personal values. They perceive caregiving as an offspring’s duty toward his or her parents. They also want to continue home care in order to maintain a model of intergenerational aid process for their own children. In fact, this finding could be explained by the more normative nature of caregiving in Eastern cultures where care provision is a means of showing respect toward parental figures (Ho et al., 2003; Janevic & Connell, 2001). It seems that Eastern caregivers pay their moral debt to their families through one-to-one care provision at home. This inflated sense of responsibility could also explain less formal service utilization among non-Western caregivers (Ho et al., 2003).

Since caregiving is also a culturally appreciated practice, Turkish caregivers do not seem to be too much disturbed by providing informal care at home. In Eastern cultures, children are raised with values of familism which prioritizes family goals over individual decisions and successes. Adult children are expected to spend their psychological, financial, and social resources for the sake of older family members. They perceive caregiving experience as a normal and anticipated course of life, in contrast to the Western caregivers who perceive caregiving as an abrupt and disruptive life event (Youn et al., 1999). This expectancy of caregiving process might explain caregivers’ lack of dissatisfaction from care provision at home. Yet, interestingly, Turkish caregivers seem to be performing caregiving duties not only out of moral responsibility but out of affection, as well. They seem content with the current intimate relationship they have with the affected parent and seem to be unwilling to break this emotional bond through NHP. In fact, to our knowledge, this is a new pattern in the literature. Existing findings indicated that parental affection is the main motivator for informal caregiving in Western cultures, while Eastern caregivers perform it out of filial obligation (Lee & Sung, 1997). However, for our sample, both filial affection and filial responsibility seem to be the main drives behind home caregiving. This integrated motive for caregiving might be explained by the hybrid social structure of the Turkey. Although certain Eastern elements are evident, Turkey is under a social change and affected by mainstream norms and values. Hence, both non-Western and mainstream cultural aspects are observed in Turkish ACC caregiving experiences.

According to some theorists, filial affection might not be sufficient to protect caregivers from adverse caregiving outcomes since relational quality is eventually disturbed due to the progressive nature of the disease (Hamon, 1992; Lee & Sung, 1997). The same is also true for filial obligation which might result in exhaustion and anger due to the overly self-sacrificing caregiving attitudes. Rather, a positive concern for loved ones is necessary to maintain familial help process with empathy and compassion (Jarret, 1995; Lee & Sung, 1997). At this point, Turkish caregivers seem to display signs of all the three, filial affection, filial obligation, and positive regard for their families, which might explain their more positive appraisals related to caregiving process.

Turkish ACC reported two main external barriers to formal service utilization as well. Although they might prefer nursing home for a more professional care provision, they are also afraid of being despised by the society. Besides, they are unsatisfied with the conditions of care facilities in Turkey both for practical reasons and nursing staffs’ negative attitudes. Interestingly, none of the caregivers mentioned any professional help offered by government or volunteer social organization. This could indicate either a lack of formal service care in Turkey or insufficient delivery of formal service programs.

Conclusions and implications

Our findings necessitate a comprehensive and culturally sensitive perspective while understanding unique needs of AD caregivers from Eastern backgrounds. It is suggested that these caregivers might have relatively different views on family interactions, aging, care provision, and caregiving, which might affect AD caregiving experience in idiosyncratic ways. It would be oversimplifying to conclude that family-based constructs such as familism and filial piety have only protective or harmful effects on caregiving experiences. As this study indicates, the effects of these values on caregiving are double-sided, including positive and negative aspects simultaneously. It seems that their cultural and religious backgrounds help Turkish ACC to appraise caregiving in a more positive light, establish strong intimate relations with the caregivers, learn from caregiving experience, and accept the undeniable aspects of caregiving. On the other hand, their filial responsibilities and affection toward their affected parents might prevent them from formal service use during caregiving. Such a pattern may run the risks of patients’ not receiving adequate professional help from formal organizations. Besides, caregivers might experience physical and psychological exhaustion due to their self-isolating caregiving patterns.

This study has important implications for clinical health psychology practices specifically for developing countries where informal caregivers are invisible in the eyes of formal care providers. First, findings of the present study may help health care professionals to understand individualized needs of Eastern caregivers and the mechanisms through which Eastern values impact caregiver outcomes. In this respect, intervention programs should not only aim to eliminate negative outcomes such as depression, burden, and strain. Rather, a strength-based approach which also focuses on familial bonds and interactions styles could be more beneficial for these caregivers. Besides, more interventions seem to be needed to eliminate internal and external barriers to NHP. At this point, it would be important to examine and challenge appraisals related to formal care utilization. For example, culture-specific programs that allow family members involvement of care provision in nursing homes and educational programs to normalize and reframe formal care utilization could be beneficial for these caregivers. Finally, more Western-oriented intervention programs are available for AD caregivers in Turkey (Rebuclic of Turkey Ministry of Family and Social Policy, 2016), which might fail to capture the effects of unique needs and coping strategies on AD caregiving outcomes. Therefore, both social policy makers and mental health care professionals should be aware of the unique caregiving experiences of caregivers from minority populations which might enhance utilization of formal care services in Eastern cultures.

Nevertheless, the present study is not without limitations. Firstly, this study involves only caregivers who provide informal care at home. Therefore, more qualitative studies are necessary to understand culturally effected motivations and emotional reactions given by the caregivers who have already placed their loved ones into nursing home facilities. Secondly, although affected by Eastern values, Turkey is also affected by global changes and is under social change and different patterns of living are evident under the influence of mainstream culture. Besides, notable differences could be observed between urban and rural regions indicating a cultural heterogenity within the country. Hence, more research is required to understand both between and within cultural group differences between caregivers of AD. Thirdly, although this research did not focus on gender differences in AD caregiving context, future studies could examine these differences specifically in collectivistic cultures like Turkey since such cultures also impose specific roles and norms to different genders. Finally, future research could also examine caregiver experiences that might be reflecting the individualistic elements that have started to be integrated into the existing culture in Turkey.

In conclusion, there might be commonalities and differences regarding AD caregiving experiences between Western and non-Western contexts. Therefore, researchers and mental health practitioners are invited to address both common and unique needs of caregivers from different cultural backgrounds for assessment and intervention purposes.