Caregiving stress and coping: a thematic analysis of Chinese family caregivers of persons with dementia.

Dementia

http://dem.sagepub.com/

Caregiving stress and coping: A thematic analysis of Chinese family caregivers of persons with dementia Fei Sun Dementia published online 17 April 2013 DOI: 10.1177/1471301213485593 The online version of this article can be found at: http://dem.sagepub.com/content/early/2013/04/16/1471301213485593

Published by: http://www.sagepublications.com

Additional services and information for Dementia can be found at: Email Alerts: http://dem.sagepub.com/cgi/alerts Subscriptions: http://dem.sagepub.com/subscriptions Reprints: http://www.sagepub.com/journalsReprints.nav Permissions: http://www.sagepub.com/journalsPermissions.nav

>> OnlineFirst Version of Record - Apr 17, 2013 What is This?

Downloaded from dem.sagepub.com at Universitats-Landesbibliothek on November 19, 2013

XML Template (2013) [11.4.2013–12:01pm] [1–16] //blrnas3/cenpro/ApplicationFiles/Journals/SAGE/3B2/DEMJ/Vol00000/130103/APPFile/SG-DEMJ130103.3d (DEM) [PREPRINTER stage]

Article

Caregiving stress and coping: A thematic analysis of Chinese family caregivers of persons with dementia

Dementia 0(0) 1–16 ! The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301213485593 dem.sagepub.com

Fei Sun Arizona State University, USA

Abstract Purpose: This study aims to identify caregiving stressors and coping strategies in a sample of family caregivers of persons with dementia living in Shanghai, China. Methods: A sample of 18 family caregivers participated in semi-structured face-to-face interviews. Information regarding caregiver appraisal of caregiving situations, difficulties with care provision, and ways of dealing with stressors were obtained. Thematic analysis was used to assess the interview data. Results: In addition to stressors directly related to caregiving demands (i.e., burden due to care recipient limitations in physical, cognitive, or behavioral functions), other salient stressors that emerged were role strains, family conflicts, and pressure from the social environment. Yet, caregivers demonstrated resilience by drawing on their coping resources from a variety of sources, including personal experience, family, technology and information, religion, and governmental support. Implications: Specific attention needs to be given to help family caregivers alleviate stress due to family conflicts and pressure from the social environment. Policy formulation and program design needs to build on caregiver strengths to support and empower Chinese families caring for relatives with dementia patients. Keywords Chinese, family caregiving, coping, stress, dementia

It is estimated that about 35.6 million people around the world live with dementia (World Health Organization, 2012), and nearly one-fifth of the world’s dementia population live in China (Feng, Chiu, Chong, Yu, & Kua, 2011). Advanced age is the most significant risk factor for developing dementia (Alzheimer’s Association, 2012). By 2050, it is estimated that Corresponding author: Fei Sun, School of Social Work, Arizona State University, 411 N Central Ave, Phoenix, AZ 85043, USA. Email: [email protected]



2

Dementia 0(0)

China’s older adult population will grow threefold to 336 million persons, comprising nearly a quarter of the total population (National Bureau of Statistics of China, 2011). Correspondingly, China’s population of persons with dementia will also grow. However, health care and other resources for dementia patients and their families in China are not adequate to address the challenges due to this demographic change. Currently, only a few of the top hospitals located in major cities provide Alzheimer’s diagnosis and treatment; many homes for the elderly are unequipped to care for dementia patients because they lack qualified caretakers; and the Chinese government provides only limited support for Alzheimer’s research, education, and services (Alzheimer’s Project in China, 2012). Given the growing aging population, an underdeveloped welfare infrastructure, and an unpredictable progression of dementia symptoms, Chinese families will face enormous challenges providing care for a relative with dementia. Most research on family caregivers (CGs) of persons with dementia is grounded in varied forms of stress coping models (e.g., Lazarus & Folkman, 1984; Pearlin, Mullan, Semple, & Skaff, 1990). The basic principles of these models presume that beyond the care demands of dementia patients, CGs’ physical and mental health is affected by their appraisal of caregiving situations and the availability of coping resources. Applying stress coping models to CGs in and outside the US, researchers (e.g., Schulz & Martire, 2004; Torti et al., 2004) have found that behavioral and psychological problems of dementia patients are a common stressor for CGs from diverse cultural groups. Torti et al. further concluded that stress and burden is a consistent theme in cross-cultural or cross-national caregiving literature. Simultaneously, evidence also points to noticeable ethnic/cultural differences in CG dementia knowledge and beliefs (Dilworth-Anderson & Gibson, 2002), levels of caregiving burden and stress (Pinquart & Sorensen, 2005), and coping and access to resources (Aranda & Knight, 1997). In line with such considerations, this study posits that stress and coping comprise the cornerstone of the dementia caregiving experience; and that cultural and ethnic values influence the caregiving process, including CG appraisal of stressors and adoption of coping strategies (Cox, 2007; Lampley-Dallas, 2002). There is still a lack of knowledge about the caregiving experience of family CGs from specific ethnic backgrounds or geographic areas (Haley, et al., 1996; Kneebone & Martin, 2003). Qualitative inquiries are essential for capturing the complexity and subtlety of caregiving features that standardized stress and coping scales might fail to disclose in specific cultural groups. For example, Shaji, Smitha, Lal, and Prince (2003) interviewed a group of Indian dementia CGs and found that CG burden was exacerbated by family conflict due to criticism from other family members, a factor that is not typically assessed in CG burden scales. Similarly, Gottlieb and Gignac (1996) used a narrative approach to explore coping strategies among a group of Canadian dementia CGs and identified several novel strategies (e.g., normalizing experience and feelings) that were not included in commonly used coping scales like the Coping Orientations to Problems Experienced scale (COPE), developed by Carver, Scheier, and Weintraub (1989).

Stress and coping in Chinese culture Similar to their counterparts in the US, Chinese CGs feel comparable levels of distress due to care recipient (CR) problem behaviors, such as delusion, anxiety, and agitation



Sun

3

(Pang et al., 2002). Both groups of CGs report positive mental health outcomes as a result of using problem-focused coping (Chou, LaMontagne, & Hepworth, 1999; Fortinsky, Kercher, & Burant, 2002). Differences between the two groups are also noted. Patterson et al. (1998) compared coping experiences of dementia CGs in Shanghai, China, to those in San Diego, California, USA, and found that Chinese CGs were more likely to use cognitive confronting (e.g., ‘‘Just accept it’’), while the American CGs used more social support coping (e.g., ‘‘Ask someone for help’’). Given limited material on Chinese caregiving in English, the literature search for this study was expanded to include caregiving studies on Chinese Americans. DilworthAnderson and Gibson (2002) examined four ethnic groups of CGs consisting of African Americans, Chinese Americans, European Americans, and Latino Americans and found that Chinese American CGs are more likely to attribute dementia to the normal aging process, which makes them less likely to seek medical treatment or help outside the family. Pang et al. (2003) found that Chinese American family CGs tended to have limited knowledge about Alzheimer’s disease (AD) and hold shameful feelings towards the disease. For this reason, they tend to cope by accepting the reality rather than by seeking positive aspects in caregiving when compared to their Caucasian counterparts (Wang, Yu, & Levkoff, 2005). After a systematic review of empirical articles on dementia caregiving in Chinese Americans, Sun, Ong, and Burnette (2012) concluded that cultural beliefs about dementia and emphasis of family harmony were prevailing values that influenced CG stress appraisal and coping behaviors. Specifically, cultural beliefs that dementia is a normal part of the aging process inhibited CGs from seeking help in a timely manner. Beliefs that dementia is a stigmatized mental illness in its later stages bring shame and disgrace to the family and may disrupt the practice of filial piety that is essential to family harmony.

Conceptual framework Taking into account the similarities and differences in caregiving between Chinese and other cultural groups, this study was grounded in two stress coping frameworks (Knight, Silverstein, McCallum, & Fox, 2000; Lazarus & Folkman, 1984) to explore the stress and coping experiences of Chinese family members who provide care to an older relative with dementia. Drawing on the stress coping model from Lazarus and Folkman, this study defines stress as CG appraised difficulties that could cause feelings of frustration, anxiety, or uneasiness; and coping as a process that involves using cognitive and behavioral approaches to deal with distressful situations. In light of Knight et al.’s (2000) sociocultural stress coping model, this study affirms that CGs appraise their caregiving situations and choose their coping strategies through a ‘‘cultural lens.’’ With the aim of exploring how Chinese family dementia CGs perceive stress and coping, this study addressed two research questions: (1) What kinds of difficulties do Chinese dementia family CGs consider to be stressful? and (2) How or in what ways do these CGs cope with caregiving stress?

Methods Qualitative interviews were used to solicit the CG perceptions of their caregiving experience. Shanghai was selected as the study site because it is the most populous city in China and has



4

Dementia 0(0)

the highest concentration of adults aged 65 or older, nearly double the national average (16.6% vs. 8.87%, respectively; National Bureau of Statistics of China, 2011). The largest mental health center in Shanghai was selected for participant recruitment. The center is well known for its leading role in the treatment of patients with mental illness and has over 300 medical doctors including 11 geriatricians. Two geriatricians known to the investigator referred family CGs who provide care to an outpatient or hospitalized dementia relative. Both CGs caring for a CR at home and in the hospital were included because of no presumed differences between the two groups. Few long-term care facilities in China are designated for Alzheimer’s patients; families choose to place patients in the hospital so that CRs can receive needed medical and nursing care. In the meantime, CGs still undertake the primary role of providing daily care to the hospitalized CRs, such as feeding, doing laundry, taking them to exercise, and keeping them company. A total sample of 18 CGs with diverse sociodemographic backgrounds (e.g., gender, relationship to CR, employment status) was purposively obtained. Participants were informed of the study purpose and their rights as research participants in accordance with university Institutional Review Board procedures. In order to allow family CGs to fully disclose their caregiving experience, the investigator asked open-ended questions during a face-to-face interview with participants. Data were collected between June and August 2009. The investigator and his research assistant each conducted nine interviews, which ranged from 50 min to one and a half hours. Sixteen interviews took place in a conference room of the geriatric unit at the mental health center and other two interviews took place at the participants’ homes.

Participants Participant inclusion criteria consisted of age 18 or above and currently providing care for a family member with dementia. Table 1 presents the background characteristics of 18 family CGs. Fifteen were providing care for CRs with Alzheimer’s-related dementia and three were providing care for CRs with vascular dementia. Three provided care for a relative in an inpatient care setting; and 15 provided care at home. Participants’ age ranged from 53 to 82, and two-thirds (n ¼ 12) were 60 or older. The majority of interviewees were female (n ¼ 11). Most CGs (n ¼ 14) cared for a spouse, including all the male CGs (n ¼ 7). The majority of CGs (n ¼ 15) were retired and did not engage in any paid work at the time of interview, except one participant who was working part-time after her retirement.

Analyses All interviews were audio recorded and transcribed. Transcripts were read and analyzed by the research team, which comprises the primary investigator and a research assistant. A thematic analysis combined of conventional and directed coding (Hsieh & Shannon, 2005) was used to derive themes related to caregiving stress and coping strategies discussed by CGs. Such thematic analysis allowed the researcher to focus on deriving the coding categories directly from the text data while having the flexibility to draw on existing theories in their coding process. Two sensitizing concepts (Glaser, 1978), stress and coping, from Lazarus and Folkman’s stress process theory (1984), were used to guide the starting process of coding. The research team examined transcripts for stress-relevant terms such as difficulties, problems, troubles,



Sun

5

Table 1. Characteristics of caregivers in the study. Participant (case no.)

Age

Gender

Relation to CR

CR age

Inpatient/out patient

Employment status

Diagnosis of CR

1 2 3 4 5 6 7 8 9 10 11 12 13

65 58 66 61 54 53 80 78 75 55 82 60 58

F F F M F F M F F M F F F

Wife Wife Wife Husband Daughter Daughter-in-law Husband Wife Wife Husband Wife Daughter Wife

69 63 70 60 93 90 76 78 77 55 90 89 58

Outpatient Outpatient Inpatient Outpatient Outpatient Outpatient Inpatient Outpatient Inpatient Outpatient Outpatient Outpatient Outpatient

V AD AD AD AD AD V AD AD AD AD AD V

14 15 16 17 18

72 53 75 74 55

M M M F M

Husband Husband Husband Wife Daughter

72 53 78 76 78

Outpatient Outpatient Outpatient Outpatient Outpatient

Retired Retired Retired Retired Employed Retired Retired Retired Retired Early retirement Retired Retired Employed part time after retirement Retired Employed Retired Retired Retired

AD AD AD AD AD

V: vascular dementia; AD: Alzheimer’s disease; CR: care recipient.

and challenges; and for coping-related terms such as stress management, relieve, help out, and ways to deal with difficulties. In an attempt to approach the text with as few presumptions as possible, the research team used open coding. Any phrases that could imply CG struggles or coping were examined carefully during the coding process. For example, CGs might not use any stress-related words but might share their feelings of guilt for not being able to take care of their grandchildren. An open code role strain fits this case. In order to maintain qualitative rigor, the investigator and the research assistant independently coded the transcripts, compared and refined their coding categories, and developed the themes. The themes were shared with and agreed upon by one of the geriatricians who referred participants to the study. There was no disagreement on the final themes among the investigator, research assistant, or geriatrician.

Results In the following section, the author first presents the three major stressors participants discussed, and then the coping strategies they employed to deal with the various stressors. Similar to Pearlin et al.’s (1990) stress process model, which distinguishes primary stressors as those directly coming from the CR’s needs, and secondary stressors as hardships triggered by primary stressors, three types of stressors emerged from the data: stressors directly related to the CG role, stressors arising from CG role strains and family



6

Dementia 0(0)

conflicts, and the pressure from the social environment with which CGs interact (see Table 2).

Stressors directly related to the CG role Alzheimer’s disease, as a currently incurable progressive disease, causes excessive worries and anxiety. CGs reported their worries about the progressive loss of independence of CRs. A caregiving husband (case 15) said, ‘‘I had to take the responsibilities of doing all [the] housework, and I admit I hold a grudge.’’ Moreover, CGs felt desperate as they pictured a pessimistic future for CRs. One caregiving husband (case 16) admitted, ‘‘I cried, but not in front of her, and I think she could no longer be cured, and what a life ahead of me . . .’’ Because the future felt bleak, one CG contemplated suicide (case 11). CRs’ physical limitations, and emotional and behavioral problems, pose challenges for CGs. Given the impaired cognition and judgment of CRs, assistance with toileting and bathing caused the most struggles. Besides physical limitations, CR depression led to worries and anxiety for CGs. A daughter CG (case 5) said, ‘‘My mom is very mobile, and she often says she is going to die and does not want to live, which drives me crazy.’’ CR behavioral and psychological problems including agitation, suspicion, delusion, wandering, aberrant behaviors, and sleeping problems were particularly stressful. One daughter CG (case 12) who was frustrated by CR anger and irritation said, ‘‘I don’t know when I will trigger her anger, and that feeling is like having a sword swinging above your head.’’ Others mentioned stressful CR behavioral and psychological problems, such questioning spouse loyalty (case 11); wandering off the street (case 2); attempting to jump from a high-rise building (case 7); and not wearing clothes at home (case 12). In one situation, a CR thought her daughter-in-law was poisoning her medications (case 18). CG poor physical health or lack of physical strength is a stressor. Age of the CGs (many were over 60) and CGs’ chronic illnesses (e.g., diabetes, hypertension) limited their physical ability to provide care for the CR. One daughter CG (case 12) said, ‘‘It is difficult for a 60-year old to take care of a 90 year old.’’ This was echoed by a 65-year-old CG (case 1) living in an apartment building with no elevator, ‘‘We live on the sixth floor, and I have no physical strength to move him (CR) upstairs or downstairs without any assistance.’’ Social restriction is another stressor. One caregiving wife stated (case 13), ‘‘I have to take him everywhere, and I feel like I am a stuck stock.’’ CGs also reported that their leisure life has changed due to their caregiving responsibilities. One daughter (case 18) who recently retired said, ‘‘We [she and her husband] could have had enjoyed our retirement life. We could travel around if not for my mother.’’ CGs mentioned the financial burden of elder care. Financial costs included transportation to hospitals, medical examinations, prescription drugs, hospital bills, personal caretakers and homemakers, and nursing home care. One caregiving wife (case 11) expressed a concern that they could not afford nursing home care for both CR and herself. The cost of hospital bills and prescription drugs, especially drugs imported from other countries, was the most frequently mentioned financial concerns. For that reason, one CG (case 13) even had to work part-time to supplement family income after her retirement.



Sun

7

Table 2. Themes related to stressors identified in the results. Types of stressors

Categories

Examples

Caregiving-related stressors

Worries CR physical limitations emotional and behavioral problems CG poor health Social restrictions Financial burden

Role strain and family conflict

Caregiving role vs. other roles Conflict with other family members

Stress from social environment

Discrimination Complicated reimbursement procedures Unavailability of adequate health/ social services

Grudge, no future of life CR toileting and bathing, CR depressive mood, agitation, and delusion Lack of physical strength Change of hobbies, stuck at home Hospital bills, cost of doctor visits, and prescription drugs Conflict with job requirement, strains due to other expectations, such as taking care of grandchildren or disabled adult children Unequal division of elder care among adult children, negative relationships between other family members and CRs Prejudice, isolation Difficulty applying for medical and welfare benefits, unfriendly staff Limited day care centers or nursing homes for dementia patients

CR: care recipient; CG: caregiver.

Stressors arising from CG role strains and family conflicts The second type of stressor arises from the CG role strain and from the conflicts between the CG and other family members. Employed CGs reported a dilemma between meeting job requirements and care demands. A daughter (case 5) said, ‘‘I am an editor of a magazine. My job puts me under a lot of pressure. I had to ask for a leave to come here [mental health center] to get medicine for her. Running between job, home and hospital is very tiring.’’ Role conflict can be triggered by financial burden. The spousal CG (case 13) mentioned above found a parttime job to help pay the cost of medical care for her husband and struggled to keep up with her job and caring for the CR. Caregiving role was also found in conflict with other family roles, such as helping to take care of a grandchild (case 3) or providing care for an adult child with a disability (case 14). Conflicts between family members also arose in participants’ narratives. Conflicts often revolved around who should provide primary care to the CR or whether CR should be placed at a nursing home. A daughter (case 18) said, ‘‘My younger brother inherited my mom’s big house and supposedly he should take care of her, but he insisted on sending mom to a nursing home. We [she and her sisters] did not agree. Now we have to take care of mom. For that, my younger brother no longer contacts us.’’ Another daughter (case 12) said, ‘‘She [the CR] could not get along with her son and daughter-in-law, and therefore was sent to a nursing home. She took too many sleeping pills at the nursing home. I had to take over.’’



8

Dementia 0(0)

Stress from the social environment CGs reported discrimination and stigma toward dementia patients and their families. A caregiving wife (case 2) said, ‘‘Dementia becomes a societal sickness when dementia patients face discrimination.’’ Most CGs indicated that they would not disclose the patient’s illness to neighbors or strangers to avoid being looked at with prejudice. Another social environmental stressor is related to the social welfare system. CGs reported difficulties getting reimbursement for medical costs and having trouble applying for governmental assistance. A caregiving wife (case 1) said, ‘‘My husband’s employment was not in Shanghai, which made it very complicated for us to get reimbursed for his medical cost.’’ Another caregiving wife (case 13) said, ‘‘I went to apply for the disability benefits from Juwei Hui (the lowest level governmental agency that helps deal with civil issues of residents in a designated residential area in China). The staff members were very impatient and unfriendly. They must think I brought trouble to them.’’ The lack of availability of supportive services, including long-term care facilities for AD patients, left CGs helpless. Several participants expressed disappointment in the lack of assisted living facilities or nursing homes for their CRs. A caregiving wife (case 2) said, ‘‘There is no place for them [dementia patients].’’ Another wife (case 3) stated she would be the first one to apply, if there were a nursing care facility designated for dementia patients who are still mobile. Three CGs with CRs living in an inpatient mental health center said that this placement was their best choice. Staying in the inpatient setting was considered a privilege, in that many other patients did not have the means to access inpatient treatment and care at the mental health center.

Coping with caregiving-related stressors Participants also described various coping strategies they adopted to deal with each of these three stressors as well as some strategies unassociated with a particular stressor (see Table 3). Generally, two types of coping strategies, problem-focused coping and emotion-focused coping (Folkman & Lazarus, 1985) were identified. Problem-focused coping involves attempts to change the demanding situation that causes stress, while emotion-focused coping aims at reducing a negative emotional state without changing the real cause of the situation. Three coping resources (i.e., individual, family, and service agencies) were identified. Coping with worries, frustration, and other negative feelings associated with caregiving. Emotionfocused coping was frequently used to deal with this stressor type. CGs engaged in hobbies such as singing (case 17), dancing (case 3), listening to music (case 15), playing computer games (case 14), and gardening (case 2) to help relieve their stressful feelings. Self-validation was another emotion-focused strategy used to bring about good feelings. A caregiving wife said (case1), ‘‘My husband (CR) is doing better than other dementia patients in our neighborhood. He looks clean and tidy. I did a very good job.’’ Some CGs vented out their negative emotions with informal support networks or sought counseling from professionals. CGs often shared their frustration by expressing their emotions with family members, friends, or CRs’ doctors. Interestingly, one family (case 18) often got together to play Ma Jiang, as a way to keep up their positive spirit.



Sun

9

Table 3. Themes related to coping identified in the results. Situations

Targeted entity

Coping resources

Examples

Coping with caregivingrelated stressors

Emotion focused

Individual Family Professionals or formal service agencies

Problem focused

Individual Family Professionals or formal service agencies

Coping with role strain and family conflict

Problem focused

Individual Formal service agencies

Coping with pressure from the social environment Coping related to overall caregiving situations

Emotion focused

Individual

Engaged in hobbies, such as singing, dancing, and gardening. Venting out emotions on friends and family members Seeking counseling from doctors Seeking AD information; Lower expectations, using technology to position CR; Asking other family members to provide assistance with daily care Applying for welfare programs; hiring in-home workers Direct confronting, planning ahead Homemakers, personal care takers Avoidance, self-validation

Seeking explanations

Individual

Finding meanings, blaming fate, praying to God, accepting reality.

CR: care recipient.

Negative emotional coping was also found. When CGs could not control their temper, verbal accusation of CRs was not uncommon (e.g., case 15). Problem-focused coping strategies were reported. One caregiving wife (case 2) found relief by comparing her CR’s progress with what she learned from books and other media. A CG who was a retired professor (case 7) self studied Chinese medicine to treat his wife. He stated, ‘‘Science is changing every day, and the life course of an individual is too short compared to the evolvement of science and medicine. I cannot wait. Chinese medicine has saved me while I was young, and it ought to work for my wife.’’ Coping with the physical limitations, and emotional and behavioral problems of CR. A few CGs provided or created opportunities for CRs to engage in physical exercise so that CRs could maintain some level of functioning capacities. CGs reported taking CRs on a walk or jog at a park. Due to physical limitations, some CRs might not be able to exercise outside of the home, so one caregiving wife (case 1) created her own games to involve the CR in physical exercise. This CG developed an exercise game of throwing and catching towels with



10

Dementia 0(0)

her CR. It turned out to be fun for herself and the CR. In situations where CRs completely lost their physical functioning, CGs sought help from family and relatives (e.g., case 16) or used paid homemakers to help with care tasks. To help relieve CRs’ emotional problems such as feelings of depression, worries, and isolation, CGs often engaged CRs in activities, such as travelling (case 2), hanging out with acquaintances in the park (case 4), praying (case 8), attending class reunions (case 17), practicing Chinese calligraphy (case 5), and singing songs of the Shanghai opera (case 18). CGs reported a variety of strategies used to deal with CR behavioral problems. Lowering expectations and avoiding confrontation with the CR were two widely used strategies. In some situations, CGs had to accept CRs’ irrational accusations. A daughter (case 12) said, ‘‘I know I had to admit that I did it [put poison in her medication] in order to get my mother to calm down.’’ CGs actively sought solutions to CR behavioral problems. A caregiving wife (case 1) said, ‘‘He could not fall asleep. I made a short massage pole. I heated it and use it to give him a massage.’’ Some CGs found humor in their interactions with CRs, like calling them by cute nicknames (e.g., little old man, old baby) (e.g., case 2), while others identified unexpected pleasant personality changes in the CR (e.g., CR changing from an angry person to a gentle one, case 16). CGs also used technology, such as a cell phone with a global positioning system device installed to prevent CRs from getting lost (e.g., case 2). Coping with social restrictions. CGs reported that they had to find alternative ways of entertaining themselves without leaving the house. A daughter (case 18) said, ‘‘I am staying at home playing computer games, reading books and newspapers, and sometimes we play cards.’’ A caregiving husband (case 16) had to give up his habit of playing chess with friends in the park, and began reading newspapers at home instead. Coping with financial burden. Problem focused coping through seeking employment (e.g., case 13) and assistance from governmental agencies was also brought up. The most frequently mentioned service agency is Juwei Hui, a local governmental unit that provides welfare assistance to residents in a catchment area. A spousal CG (case 1) reported getting monetary support from the Juwei Hui. Another caregiving wife (case 3) intended to apply for benefits from a Shanghai social disability program through Juwei Hui.

Coping with role strain and family conflict No specific coping strategy was identified to deal with CG role strain. Problem-focused coping was found to deal with family conflict. One caregiving husband (case 15) reported that he confronted his son who was blaming the patient for not being a normal mother. The husband reasoned with his son to ensure blaming his mother would never again happen. Another CG planned ahead to avoid foreseeable family conflict. This daughter (case 18) wanted to sell her mother’s house so that she could use that money to pay for her mother’s long-term care. Otherwise she said ‘‘the house would become an issue of dispute and every sibling regardless whether they contributed to the care of the mother, and would request a share of the housing.’’

Coping with pressure from the social environment One way that CGs used to avoid being discriminated against was to withhold the patient’s illness from their neighbors or strangers. But one CG (case 1) said, ‘‘I am not afraid of letting



Sun

11

others know (patient’s illness). I am making myself a good example of a caregiver, and a good neighbor, and nobody looks down upon me.’’ No specific strategies were identified to deal with difficulties in accessing benefits of medical insurance or health/ social services.

Coping with overall caregiving situations Not all coping approaches necessarily related to a particular caregiving stressor. Seeking an explanation was an approach CGs used to deal with their overall caregiving situations. CGs found meanings for their caregiving effort after reflection on the goodness of CRs before their illness, thereby feeling motivated to continue the responsibility to their loved ones (e.g., case 3). Others attributed their conditions to fate (e.g., cases 14 and 15), accepted that everything is prearranged by God or Karma (e.g., case 9), or tried to bargain with God (e.g., cases 7 and 13). Regardless of the explanation given by CGs, these beliefs and behaviors appeared to bring them comfort and peace.

Discussion This study explored the stress and coping experiences of a group of dementia family CGs living in China’s most populous city. Guided by the sociocultural stress process model, the authors identified three types of stressors and relevant coping strategies that were salient in this group of Chinese family CGs. Stressor directly tied to the CG’s role is similar to those identified in Western literature. CG physical, social, emotional, and financial strains identified in this study were consistent with question items in Zarit’s Burden Scale (Zarit, Reever, & Bach-Peterson, 1980) and the Cost of Caregiving Index (Kosberg & Cairl, 1986), indicating that caregiving demands affect CGs in multiple domains. Similar to previous studies (e.g., Chung, 2001), excessive worries or concerns about the disease progression were substantial in CGs who took care of CRs apparently at an early disease stage. CR behavioral and psychological problems caused much burden on CGs. Although we could not precisely identify the most stressful behavioral and psychological problems, agitation, delusion, aberrant motor behaviors, and sleep problems seemed to be most bothersome to CGs. Interestingly, CGs also reported they were concerned with CR depression and senility. This finding is different from Pang et al.’s (2002) study conducted 10 years ago, which suggested that Chinese CGs tended to pay little attention to depression and apathy in dementia patients. It is suspected that as Chinese CGs’ knowledge regarding of dementia and aging has improved over the decade, CGs have realized that depressive or senile symptoms are not a normal part of aging but rather symptoms of a disease affecting one’s emotional well-being. While CG role strain was described as a secondary stressor in Pearlin et al.’s stress process model, in this study it was found to contain rich connotations in a Chinese context. CG role strain between job responsibility and the caregiving role was present, but was not particularly prominent. Chinese CGs had typically retired by the time they became a fulltime CG, given the fact that Chinese women typically retire at 50 or 55 and men retire at 60. Rather, the conventional expectations for women in their 50s or 60s are to provide support (e.g., cooking) for their working adult children or to help take care of grandchildren. Providing care for a dementia relative is not typically expected. Thus, CG role strain often occurs when CGs struggle to live up to social norms associated with their other



12

Dementia 0(0)

roles. CG role strain might turn into a family conflict. CGs, particularly those who are adult children, might argue over who must care for the elder or how the elder’s resources are distributed. Pressure from the social environment deserves crucial attention. Prejudice or discrimination toward dementia families seems widespread in China. Because dementia is considered a shameful disease, family CGs felt uncomfortable acknowledging their relative’s illness to outsiders. The ‘‘red tape’’ surrounding governmental service delivery systems is an added barrier for CGs who need assistance. In Shanghai, there are about 2.35 million older adults age 65 or older (Gerontological Society of Shanghai, 2012). According to the estimated 6% prevalence rate of dementia (Zhang et al., 2005), there are about 140,000 patients with dementia in Shanghai. Yet, there is only one nursing home for dementia patients, not to mention a lack of assisted living facilities or day care centers designated for dementia patients (Gerontological Society of Shanghai, 2012). Multiple stressors felt by a single CG exacerbated CG burden. For example, financial difficulties and time constraints pulled some CGs in different directions. A few of retired CGs who returned so they could afford CRs’ medical and nursing care costs became more frustrated because they had less time to spend with the CR. Coping is a multi-dimensional concept, and at least two Chinese CGs’ coping styles were similar to those in Western literature: emotion-focused and problem-focused coping (Lazarus & Folkman, 1984). Specific coping strategies identified in this study included a collection of cognitive and behavioral methods that drew on a variety of resources, such as personal experience (e.g., wisdom, religion, and knowledge), family, and assistance from service agencies. Coping is also pragmatic and situational. CGs may rely on similar coping strategies to deal with different situations. For example, CGs used emotion-focused coping strategies to manage caregiving-related stressors, CG role strain, and pressure from the social environment. However, given that behavioral problems change at different dementia stages, the same coping strategies may not be useful (Kneebone & Martin, 2003). For example, acceptance coping (e.g., ‘‘try not to think about it’’) might benefit a CG who is frustrated with a CR calling a person by the wrong name, but it might be harmful in a situation where the CR refuses to eat. CGs at the early stages of dementia were still actively seeking medical ‘‘magic’’ to treat their patients, but those at later stages expressed no such need. One CG (case 9) of a CR in a very advanced stage of dementia hoped that her husband ‘‘would die in peace like an elephant.’’ Nevertheless, not all coping strategies are considered beneficial to CGs. In general, our findings support Kneebone and Martin’s (2003) conclusion that the problem-solving styles of coping are more positive than emotion-focused coping. Particularly, denial or avoidance focused emotional coping styles tend to lead to CG depression (Powers, GallagherThompson, & Kraemer, 2002). Most problem-focused coping strategies yielded promising outcomes, except those aimed at correcting CR behaviors. Due to the chronic, long-term nature of AD, a CG may use one or more coping strategies to deal with different stressors; the predominance of one type is largely influenced by one’s personal style and the nature of the stressful event (Folkman & Lazarus, 1985; Folkman & Moskowitz, 2004). Although coping is situational, it is possible that some CGs are more likely to indulge in certain patterns of coping, such as emotion-focused coping (e.g., crying, praying) or active/deliberate coping (e.g., seeking solutions, asking for assistance). It is not the intent of this study to classify participants into different coping style groups. Rather, the



Sun

13

focus is to identify coping knowledge that can be shared with CGs to manage their burden, depression, and anxiety. There are several limitations to be noted. This study took place in Shanghai, the most developed area in China. Family members living in this metropolitan city might have a higher socioeconomic status and better access to resources than those living in less developed areas of China. The findings were based on a single interview of each CG. Although the investigator felt that sufficient information had been obtained, there is always the possibility that more information might be captured in repeated interviews (Padgett, 2008).

Implications and conclusions Compared to the experiences of Chinese American CGs (Wu, Emerson Lombardo, & Chang, 2010), Chinese families in this study experienced more challenges accessing treatment options for dementia, had fewer specialized resources (e.g., nursing homes, home care) for dementia patients, and less formal support for family CGs. This is because China is still in the exploratory phase of developing a long-term care model that is congruent with its own culture of elder care. The Chinese government has claimed to build a ‘‘family-based, community-oriented, and social worker-supported’’ dementia care model (Cui, Wang, & Wang, 2010). In order to establish an effective collaborative partnership between family, community, and government and non-governmental services, it is recommended that interventionists or service providers assess CG strengths and needs prior to implementing interventions. It appears that a multi-component intervention targeting CG affect, skills, and knowledge would be more effective than a single-component intervention (Schulz, GallagherThompson, Haley, & Czaja, 2000). For Chinese families, it is beneficial to include services in the intervention specifically for CRs who are also in line with Chinese values of family unity and harmony. Second, interventions should cultivate CG strengths to encourage their creative thinking in dealing with tough caregiving situations. Given the limited availability of formal resources, CGs need to draw on their own resources, including knowledge, experience, or creativity to deal with an immediate caregiving situation. CGs’ continuing love for their CRs is a motivation to try new approaches to manage their difficult situations. Last, additional attention needs to be paid to older spousal CGs. In this group of 18 CGs, all spousal CGs have adult children who are not able to help with caregiving duties because of job responsibilities or because they immigrated to another country. It remains important to assist spousal CGs with caregiving tasks as well as with the accompanying loss of connections to their adult children. Finally, it is also recommended that efforts be made to combat the discrimination against patients with dementia in Chinese society. The general public needs to be educated, and CRs and CGs need to be empowered to be involved in formulating policies, plans, and services that will meet their collective and individual needs. Acknowledgements The author thanks Dr Jinghua Wang and Dr Xia Li from Shanghai Mental Health Center for their assistance with participant recruitment. The author also thanks Mr Jing Zhang for his assistance with transcribing data and Ms Xiang Gao for her assistance with data analysis.



14

Dementia 0(0)

Funding This project is supported by the School of Social Work at Arizona State University.

References Alzheimer’s Association. (2012). 2012 Alzheimer’s disease facts and figures. Retrieved from http:// www.alz.org/downloads/facts_figures_2012.pdf Alzheimer’s Project in China. (2012). Dementia in China. Retrieved from http:// www.memory360.org/en/ Aranda, M. P., & Knight, B. G. (1997). The influence of ethnicity and culture on the caregiver stress and coping process: A socio-cultural review and analysis. Gerontologist, 37, 342–354. Carver, C. S., Scheier, M. F., & Weintraub, J. K. (1989). Assessing coping strategies: A theoretically based approach. Journal of Personality & Social Psychology, 56, 267–283. Chou, K. R., LaMontagne, L. L., & Hepworth, J. T. (1999). Burden experienced by caregivers of relatives with dementia in Taiwan. Nursing Research, 48, 206–214. Chung, J. (2001). Empowering individuals with early dementia and their carers: An exploratory study in the Chinese context. American Journal of Alzheimer’s Disease and Other Dementias, 16, 85–88. Cox, C. B. (2007). Cultural and dementia. In C. B. Cox (Ed.), Dementia and social work practice: Research and intervention (pp. 173–188). New York, NY: Spring Publishing. Cui, D., Wang, P. G., & Wang, Q. (2010). A three-pronged approach to the care of elders with Alzheimer’s disease. Ageing International, 35, 142–152. Dilworth-Anderson, P., & Gibson, B. E. (2002). The cultural influence of values, norms, meanings, and perceptions in understanding dementia in ethnic minorities. Alzheimer Disease and Associated Disorders, 16, S56–S63. Feng, L., Chiu, H., Chong, M., Yu, X., & Kua, E. (2011). Dementia in Chinese populations: Current data and future research. Asia-Pacific Psychiatry, 3, 109–114. Folkman, S., & Lazarus, R. S. (1985). If it changes it must be a process: Study of emotion and coping during three stages of a college examination. Journal of Personality and Social Psychology, 48, 150–170. Folkman, S., & Moskowitz, J. T. (2004). Coping: Pitfalls and promise. Annual Review of Psychology, 55, 745–774. Fortinsky, R. H., Kercher, K., & Burant, C. (2002). Measurement and correlates of family caregiver self-efficacy for managing dementia. Aging & Mental Health, 6, 153–160. Gerontological Society of Shanghai. (2012). 2011 Report on the development of aging industry in Shanghai. Retrieved from http://www.shanghaigss.org.cn/news_view.asp?newsid¼8828. Glaser, B. (1978). Theoretical sensitivity. Mill Valley, CA: The Sociology Press. Gottlieb, B. H., & Gignac, M. A. M. (1996). Content and domain specificity of coping among family caregivers of persons with dementia. Journal of Aging Studies, 10, 137–155. Haley, W. E., Roth, D. L., Coleton, M. I., Ford, G. R., West, C. A. C., Collins, R. P., . . . Isobe, T. L. (1996). Appraisal, coping, and social support as mediators of well-being in Black and White family caregivers of patients with Alzheimer’s disease. Journal of Consulting and Clinical Psychology, 64, 121–129. Hsieh, H. F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277–1287. Kneebone, I. I., & Martin, P. R. (2003). Coping and caregivers of people with dementia. British Journal of Health Psychology, 8, 1–17. Knight, B. G., Silverstein, M., McCallum, T. J., & Fox, L. S. (2000). A sociocultural stress and coping model for mental health outcomes among African American caregivers in Southern California. The Journals of Gerontology Series A: Biological Sciences and Medical Sciences, 55, 142–150.



Sun

15

Kosberg, J. I., & Cairl, R. (1986). The cost of care index: A case management tool for screening informal caregivers. Gerontologist, 26, 273–278. Lampley-Dallas, V. (2002). Research issues for minority dementia patients and their caregivers: What are the gaps in our knowledge base? Alzheimer Disease & Associated Disorders, 16, S46–S49. Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer. National Bureau of Statistics of China. (2011). A brief report of the Sixth National Population Survey in 2010. Retrieved from http://www.stats.gov.cn/tjgb/rkpcgb/qgrkpcgb/t20110428_402722232.htm. Padgett, D. K. (2008). Qualitative methods in social work research (2nd ed). Thousand Oaks, CA: Sage. Pang, F. C., Chow, T. W., Cummings, J. L., Leung, V. P. Y., Chiu, H. F. K., Lam, L. C. W., . . . Fuh, J. L. (2002). Effect of neuropsychiatric symptoms of Alzheimer’s disease on Chinese and American caregivers. International Journal of Geriatric Psychiatry, 17, 29–34. Pang, E. C., Jordan-Marsh, M., Silverstein, M., & Cody, M. (2003). Health-seeking behaviors of elderly Chinese Americans: Shifts in expectations. The Gerontologist, 43, 864–874. Patterson, T. L., Semple, S. J., Shaw, W. S., Yu, E., Zhang, M. Y., Wu, W., . . . Grant, I. (1998). The cultural context of caregiving: A comparison of Alzheimer’s caregivers in Shanghai, China and San Diego, California. Psychological Medicine, 28, 1071–1084. Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. Gerontologist, 30, 583–594. Pinquart, M., & Sorensen, S. (2005). Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: A meta-analysis. The Gerontologist, 45(1), 90–106. Powers, D. V., Gallagher-Thompson, D., & Kraemer, H. C. (2002). Coping and depression in Alzheimer’s caregivers: Longitudinal evidence of stability. Journal of Gerontology B Psychological and Social Sciences, 57, 205–211. Schulz, R., Gallagher-Thompson, D., Haley, W., & Czaja, S. (2000). Understanding the interventions process: A theoretical/conceptual framework for intervention approaches to caregving. In R. Schulz (Ed.), Handbook on dementia caregiving (pp. 33–60). New York, NY: Springer Publishing Company. Schulz, R., & Martire, L. M. (2004). Family caregiving of persons with dementia: Prevalence, health effects, and support strategies. American Journal of Geriatric Psychiatry, 12, 240–249. Shaji, K. S., Smitha, K., Lai, K. P., & Prince, M. J. (2003). Caregivers of people with Alzheimer’s disease: A qualitative study from the Indian 10/66 Dementia Research Network. International Journal of Geriatric Psychiatry, 18(1), 1–6. Sun, F., Ong, R., & Burnette, D. (2012). The influence of ethnicity and culture on dementia caregiving: A review of empirical studies on Chinese Americans. American Journal of Alzheimer’s Disease & Other Dementias, 27(1), 13–22. Torti, F. M., Gwyther, L. P., Reed, S. D., Friedman, J. Y., & Schulman, K. A. (2004). A multinational review of recent trends and reports in dementia caregiver burden. Alzheimer Disease & Associated Disorders, 18, 99–109. Wu, B., Emerson Lombardo, N., & Chang, K. (2010). Dementia care programs and services for Chinese Americans in the U.S. Ageing International, 35, 128–141. Wang, H. L., Yu, X., & LevKoff, S. E. (2005). Mental health status and coping strategies of dementia patients’ caregivers of diverse ethnicities: A cross-cultural study. The National Medical Journal of China, 85, 2966–2970. World Health Organization. (2012). Dementia: A public health priority. Geneva, Switzerland: WHO Press. Retrieved from http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf. Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlated of feelings of burden. Gerontologist, 20, 649–655. Zhang, Z. X., Zahner, G. E. P., Roman, G. C., Liu, J., Hong, Z., Qu, Q. M., . . . Li, H. (2005). Dementia subtypes in China: Prevalence in Beijing, Xian, Shanghai, and Chengdu. Archives of Neurology, 62, 447–453.



16

Dementia 0(0)

Author Biography Fei Sun is an assistant professor at the School of Social Work at Arizona State University. He is a Hartford Geriatric Social Work Faculty Scholar. His general area of interest is mental health and aging. Particularly, he focuses on Alzheimer’s caregiving in Chinese and Chinese American families.


Religious Coping in Caregivers of Family Members With Dementia.

Stress-buffering Effect of Coping Strategies on Interrole Conflict among Family Caregivers of People with Dementia.

Sleep in persons with frontotemporal dementia and their family caregivers.

Health economic analysis on a psychosocial intervention for family caregivers of persons with dementia.

A meta-review of stress, coping and interventions in dementia and dementia caregiving.

Anxiety in family caregivers of hospitalized persons with dementia: contributing factors and responses.

Coping styles and social support among depressed Chinese family caregivers of patients with esophageal cancer.

Positive aspects of caregiving (PAC): scale validation among Chinese dementia caregivers (CG).

Coping with cognitive impairment and dementia: Rural caregivers' perspectives.

Improving caregiving competence, stress coping, and mental well-being in informal dementia carers.

Psychometric Evaluation of the Caregiving Competence Scale Among Chinese Family Caregivers.

Depression in informal caregivers of persons with dementia.

Structured interviews examining the burden, coping, self-efficacy, and quality of life among family caregivers of persons with dementia in Singapore.

Factor Analysis of the 12-Item Zarit Burden Interview in Caregivers of Persons Diagnosed With Dementia.

Multidimensional Caregiving Burden of Female Family Caregivers in Korea.

Abuse of older persons with dementia by family caregivers: results of a 6-month prospective study in Hong Kong.

How Do Family Caregivers of Older People Give Up Caregiving?

Caring for the family caregivers of persons with mental illness.

Effectiveness of a fotonovela for reducing depression and stress in Latino dementia family caregivers.

Clinical assessment of family caregivers in dementia.

Changes in communication of Deaf people with dementia: A thematic interview with a close family member.

Information Needs of Family Caregivers of People With Dementia.

The experience of family carers attending a joint reminiscence group with people with dementia: A thematic analysis.

Caregiving Choice and Emotional Stress Among Cancer Caregivers.