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. Author manuscript; available in PMC: 2025 Mar 24.
Published in final edited form as: Aging Ment Health. 2023 Dec 1;28(3):466–472. doi: 10.1080/13607863.2023.2285918

‘It’s a lonely journey’: caregiving experiences and psychosocial distress among Chinese American dementia family caregivers

Y Alicia Hong a, Kang Shen a, Hae-Ra Han b, Van Ta Park c, Huixing Kate Lu d, Carol Cleaveland e
PMCID: PMC11931576  NIHMSID: NIHMS2065016  PMID: 38038630

Abstract

Objectives:

Chinese American family caregivers of persons with Alzheimer’s disease and related dementia (ADRD) are a vulnerable but understudied population. The goal of this qualitative study was to examine their caregiving experiences and psychosocial distress process and explore intervention strategies.

Methods:

In-depth individual interviews were conducted with 18 Chinese American dementia caregivers. All interviews were transcribed verbatim; thematic content analysis was conducted to construct a conceptual framework.

Results:

All participants reported high levels of caregiving stress associated with care-recipients’ advanced symptoms and required assistance in activities in daily living. The relationship of caregiver and care-recipient was strained in their roles transition. The complex healthcare system, insurance policies, and a lack of linguistically appropriate services aggravated their psychosocial distress. Chinese cultural norms on ‘family harmony’ hindered their seeking of social support. Prolonged caregiving stress led to physical and mental impairment, including poor sleep, depression, and chronic conditions. Participants described their caregiving experience as ‘a lonely journey’ with a pervasive sense of hopelessness and withdrawal; their distress process was positively or negatively influenced by their coping strategies. All participants were eager for any kind of support; especially culturally appropriate programs that could improve their caregiving skills, self-care, and access to services.

Conclusion:

Our data suggest that Chinese American dementia caregivers, especially those with limited English proficiency, experience elevated psychosocial distress, which was aggravated by the barriers to social support and health services due to their immigrant and minority status. Culturally appropriate targeted intervention is urgently needed for this underserved and vulnerable population.

Keywords: Alzheimer’s disease and related dementias, caregivers, psychosocial distress, qualitative study, conceptual framework

Introduction

Caring for a person with Alzheimer’s disease and related dementia (ADRD) involves a myriad of tasks ranging from assistance with activities of daily living (ADLs) such as bathing and dressing to instrumental activities of daily living (IADLs) such as paying bills, shopping, or using transportation (Alzheimer’s Association, 2023). In addition, caregivers provide emotional support, while also communicating and coordinating care with other family members and healthcare providers, ensuring safety at home and elsewhere, and managing health conditions of persons with ADRD (Alzheimer’s Association, 2023). Because of the prolonged and stressful nature of ADRD caregiving, family caregivers experience high rates of psychosocial distress and adverse mental health outcomes (Allen et al., 2017; Fonareva & Oken, 2014; Schulz & Martire, 2004). For example, a recent study reported that 59% of family caregivers of persons with ADRD reported high level of emotional stress; 30%~40% reported depressive symptoms and more than 40% reported anxiety (Sallim et al., 2015). In the U.S., there are about 1 million such unpaid family caregivers taking care of 6.7 million persons with ADRD (Alzheimer’s Association, 2023), who are frequently referred to as ‘hidden patients’ (Alzheimer’s Association, 2021).

Theoretical framework on caregiving distress process

Literature on dementia caregivers informed by the socio-ecological model suggests that caregiving stress is determined by factors at multiple levels—individual, interpersonal, and community (Judge et al., 2010). At the individual level, caregivers’ age, gender, and socioeconomic status affect their caregiving experience and perceived stress. Care-recipient’s characteristics may have a more direct effect on caregiver’s experience. When a person with advanced ADRD requires assistance of ADL, for example, aggressive behaviors, wandering, and nighttime disturbance, the caregiver reports significantly higher levels of strain compared to caregivers of persons early stage of ADRD (Jütten et al., 2018; Ornstein & Gaugler, 2012; Schulz & Martire, 2004). At the interpersonal level, the relationship between caregiver and care-recipient (e.g. spouse or child) would have different effects on the relationship strain (Bramble et al., 2009; Farina et al., 2017; Monin et al., 2015; van den Kieboom et al., 2020). Intergenerational differences and emotional attachment also aggravate caregiving stress (Pinquart & Sörensen, 2011). Caregivers who work or have other family responsibilities tend to report higher levels of stress (Farina et al., 2017). At the community level, whether caregivers with a supportive social network and easy access to affordable health services and other local resources are more likely to adapt positively to caregiving stress (Dam et al., 2016; Robinson et al., 2013).

Intensive caregiving and prolonged stress lead to multiple adverse health outcomes in caregivers, including poor sleep, depression, anxiety, and overall poor quality of life (Sallim et al., 2015; Sheehan et al., 2021). And the relationship between caregiving distress and caregiver’s health outcomes is moderated by caregivers’ coping strategies. For example, caregivers with positive coping strategies (e.g. mastery of caregiving, self-care, seeking and receiving social support, and access to health and community services) can alleviate their caregiving burden while improving wellbeing for both caregivers and care-recipients (Harmell et al., 2011; Oliveira et al., 2019; Waligora et al., 2019).

The complex process of caregiving distress takes place in the context of culture and policy. For example, one’s caregiving behaviors and distress process are shaped by cultural values and beliefs (Brooke et al., 2018). Additionally, for immigrant and minority caregivers, their caregiving experience is especially susceptible to immigration and health insurance policies, available social resources, and social norms (Daker-White et al., 2002; Kenning et al., 2017; Sun et al., 2014). To this end, understanding the caregiving experience and the distress process of immigrant and minority caregivers is the first step to inform culturally sensitive intervention for this vulnerable caregiver population (Judge et al., 2010).

Chinese American dementia caregivers

Despite a growing attention on the ‘hidden patients’ of dementia caregivers and the psychosocial distress they experience, studies on immigrant and minority caregivers remain scarce (Alzheimer’s Association, 2021). Asian Americans represent the fastest-growing racial group in the U.S.; they accounted for 7% of the total U.S. population in 2020 and are projected to reach 12% in 2050. Chinese Americans represent nearly a quarter (23%) of the Asian American population (Pew Research Center, 2021), but the literature on Chinese American dementia caregivers is rather limited.

The existing studies suggest that cultural values of family harmony and practice of filial piety permeate all aspects of Chinese Americans’ caregiving process, including their appraisal of stress and coping strategies (Sun et al., 2012). Caring for older family members is not only a sign of love and pride but also a moral obligation, sometimes at the expense of one’s wellbeing (Lai, 2010; Zhan, 2004). Most Chinese caregivers have limited knowledge and use of formal care and support services; they are also disconnected from ‘mainstream’ dementia support groups due to language and cultural barriers (Sun et al., 2014). Such disengagement and isolation is exacerbated by their minority and immigrant status, and those without English proficiency are further marginalized (Jang & Kim, 2019). As a result, Chinese American caregivers experience high rates of stress, mental disorders, and chronic conditions (Holland et al., 2010; Hu et al., 2021). However, targeted interventions for this vulnerable population remain scarce (Hong et al., 2022; 2023; Ma & Saw, 2020).

To address the above literature gaps, in this study, we examined Chinese Americans’ caregiving experiences, psychosocial distress process, and coping strategies. We also sought out suggestions for future caregiving interventions. The data will inform the development of effective and culturally sensitive caregiving interventions for this understudied population.

Methods

Study setting and participant recruitment

This study was conducted in partnership with a community-based organization serving Chinese Americans in Washington DC metropolitan area. Participants were eligible if they were 21 years or older, self-identified as Chinese or Chinese American, taking care of a family member or loved one with ADRD. A recruitment flyer in Chinese (traditional and simplified characters) was distributed through social media and email newsletters. Potential participants would call a project-designated phone number on the flyer for more information. Those who met the participation eligibility would learn more about the study and invited to participate. A total of 18 Chinese American caregivers participated in the study. The study protocol was approved by the Institutional Review Board of George Mason University (IRB1849712).

Interview guide

Prior to data collection, the study team developed a semi-structured interview guide based on previous studies of dementia caregivers and the theoretical framework on caregiving distress (Dai et al., 2015; Judge et al., 2010; Liu et al., 2008; Meyer et al., 2015; Sun et al., 2012). The interview guide covered the following domains: (1) family structure and immigration, identity and cultural values on caregiving, and beliefs about dementia, (2) personal and family experience of dementia and caregiving, help-seeking and service utilization, and coping strategies, and (3) suggestions for future interventions or support programs.

Data collection procedure

All individual in-depth interviews were conducted in Mandarin or Cantonese by the lead author (YAH) over Zoom. Each interview lasted 30–60 min and was recorded on Zoom. The interviewer used the semi-structured interview guide but allowed the conversation to flow naturally with the flexibility to explore other domains and topics. Upon completion of the interview, each participant received a gift card of US $50 as an incentive. The transcripts generated by Zoom were compared to the recording and edited for accuracy. Personal information was removed before the transcript was entered into Word processing software for data analysis.

Data analysis

Data analysis followed the procedure outlined by Ryan and Bernard (2003): identifying themes, building codebooks, marking texts, constructing models (relationships between themes), and testing these models against empirical data. Preliminary coding started with reading and rereading the transcripts. Each transcript was coded independently by two Chinese-speaking researchers (YAH and KS). Coding themes were developed from the interview guide (Joffe & Yardley, 2004; Ryan & Bernard, 2003) and new themes emerged during the coding process. A matrix of participant characteristics, major themes, quote excerpts and coder’s observations were prepared in English to facilitate the discussion within the bilingual research team. Then, the team discussed the codes, major themes, and exemplary quotes to construct an initial conceptual framework. After that, two researchers independently recoded the transcripts using the framework to test its appropriateness. Discrepancies between the coders were discussed in the research team until a consensus was reached.

Results

Participant characteristics

Participant ages ranged from 48 to 85 years with a median age of 58. About 83% (n = 15) were female, 28% (n = 5) were taking care of their spouses, 61% (n = 11) were taking care of their parents or in-laws. Two thirds of participants (n = 12) were working in addition to caregiving. About half of the participants had limited English proficiency.

Conceptual framework and overview of findings

The major themes emerged from data analysis and their inter-relationships were constructed as a conceptual framework (Figure 1), which illustrates the process of caregiving distress, its determinants at multiple levels, and potential intervention strategies.

Figure 1.

Figure 1.

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Conceptual framework of caregiving distress process.

First, all participants experienced high levels of stress, which were directly affected by care-recipient’s symptoms and functional status as well as caregiver’s age, health status, their relationship with care-recipient, and other responsibilities. The complex healthcare system, insurance restrictions for immigrants, and a lack of bilingual providers aggravated their distress. Chinese cultural norm on ‘family harmony’ sets an invisible barrier for caregivers to seeking social support. Second, prolonged and intensive caregiving adversely impair caregivers’ physical and mental health. There was a pervasive sense of loneliness, powerlessness, and grief among caregivers; and none had an advanced care plan. Some reported mental and physical disorders including depressive symptoms, poor sleep, and chronic conditions such as high blood pressure and diabetes. Third, caregivers used different coping strategies in response to stress and impairment they were experiencing. Some adopted positive coping with perspective thinking, self-care, and social support; while others responded negatively with pessimism and withdrawal. All participants welcomed support and programs; especially culturally appropriate programs that could improve their caregiving, self-care, and access to services.

Key findings with example quotes

Individual level factors: characteristics of caregivers and care-recipients

About two thirds of caregivers were children of care-recipients; daughters or daughters-in-law represented a majority of this group. Their age, education, acculturation, and health conditions were critical in their caregiving experience.

It was very hard, it’s like a full-time job. I’m just tired, tired, tired. It’s more difficult than taking care of a baby as there is no hope in sight.

[49-year-old woman taking care of her 77-year-old mother]

Most (83%) care-recipients had chronic conditions other than ADRD, including diabetes, depression, heart disease, hearing loss, and osteoporosis. Many had difficulties with ADL and IADL, so they need caregivers to help with taking medication, bathing, feeding, and other daily activities.

I get up every day at 4am, prepare breakfast for him, feed him, clean up, and change his diaper. After that, I quickly eat my breakfast, then go to work at 7. His brother comes at lunch time to feed him and change his diaper. I come home at 3:30, and then take care of him for the rest of the day and night.

[52-year-old woman taking care of her 62-yr old husband]

Compared to assistance of activities of daily living, dealing with care-recipients’ problematic behaviors were more stressful.

He often becomes angry and aggressive in the afternoon, shouting and throwing things. It can be very scary. I’m the only one who can get close to him.

[53-year-old woman taking care of her 85-year-old father-in-law]

Assistance of IADL, especially arranging doctor’s appointment and transportation is burdensome.

I need to take her to many doctor’s appointments. Different doctors for different problems. Sometimes there are 5 or 6 appointments a week. It’s exhausting.

[61-year-old daughter taking care of her 83-year-old mother]

Interpersonal level factors

Relationship of caregiver and care-recipient:

Both caregivers and care-recipients had to go through the relationship transition as the condition of care-recipient continued to deteriorate. For spouses, they needed to transition from partnering relationship to dependent relationship.

She never sleeps well at night, always wakes up and wanders around. She needs diapers at night. She’s eligible to a home aide covered by her insurance, but we haven’t requested one. I’m the only one she trusts. Also, she mumbles a lot, I’m the only one who understands her mumbling.

[83-year-old man taking care of his 84-year-old wife]

For children, filial piety is both a moral obligation and source of pride.

I know one day I’m not able to take care of her anymore, as I’m 66 now. But she’s my mother, it’s my duty. I can’t imagine she lives alone in a nursing home.

[66-year-old woman taking care of her 88-year-old mother]

Other responsibilities of caregivers:

Most caregivers were children of care-recipients and were working. So they had to juggle between caregiving, work, and other responsibilities.

I had to turn down a promotion opportunity and chose to work from home, so I can have a more flexible schedule and can take care of my mom. [Sigh] At this age, I know that was my last chance to further my career, but I don’t have other options. She can only count on me.

[51-year-old woman taking care of her 88-year-old mother]

In addition to taking care of a parent with ADRD, some caregivers were taking care of their other parents with chronic conditions.

My mom has dementia, my dad has hearing loss, high blood pressure, and diabetes. Every day, just getting them to take medications is a lot of work, not mention scheduling doctor’s appointments, taking them to doctor’s offices and follow-ups.

[49-year-old woman taking care of her 77-year-old mother]

Family as a source of both stress and support:

Less than a third of participants had family members nearby to give a hand. As first-generation immigrants, they also had a smaller social network in the country.

I’m the only child of my mom. My only son works in California, he visits twice a year at most.

[53-year-old woman taking care of her 78-year-old mother]

As Chinese cultural values on ‘family harmony’, many do not share care recipient’s true condition with family or friends.

We haven’t told our relatives what exactly happened. We had a perfect life before he got this (dementia), all our relatives envied my family. I don’t know how others would talk about us. What a big loss of face!

[69-year-old woman taking care of her 75-year-old husband]

Community level factors

Shrunken social networks:

All caregivers reported a shrunk social network as they had to give up most social activities to take care of the loved one living with dementia.

I used to play soccer with friends every weekend… I haven’t played soccer for 5 years. Our main activity is walking to the park nearby, even that has become more difficult as she needs a wheelchair now.

[84-year-old man taking care of his 85-year-old wife]

A smaller and inactive social network led to limited social support. Most caregivers reported they rarely seek help from friends.

How possible is it to ask help from friends? Everyone is busy, maybe once or twice we can ask for help, but for our situation, we need help every day.

[69-year-old woman taking care of her 69-year-old husband]

Language barrier as a major challenge when communicating with healthcare providers:

Language barrier was frequently mentioned as a major obstacle in their daily life, especially when communicating with a healthcare provider.

Last year, we had a doctor who speaks Mandarin, but this year the insurance policy changed, and we had to change to a doctor who doesn’t speak Mandarin. Now I have to ask my daughter to go with us for every appointment and it’s hard to schedule.

[85-year-old woman taking care of her 89-year-old husband]

Limited English proficiency also hindered their compliance of medication.

I don’t fully understand why the doctor told her to take so many medications. In addition to medication for her high cholesterol and diabetes, there is a medicine to slow down her memory loss, but it seems not effective, so we stopped taking that. There are other prescriptions I don’t know for what purposes, so we sometimes skip them too.

[69-year-old woman taking care of her 69-year-old husband]

Use of community resources: limited access, cultural barriers, and policy restrictions:

When asked if they have used any community resources, several caregivers mentioned a local Chinese American community center. However, the service was disrupted due to the COVID pandemic and has not been fully restored.

Three years ago, my mom could go to the community center every day. But during the COVID lock-down, she could not go there anymore; she has deteriorated rapidly since then. Now she doesn’t talk much and becomes less active.

[52-year-old woman taking care of her 90-year-old mother]

Language barrier was a major reason for not participating in local support groups or using other community resources.

I went to a local dementia caregivers support group 4 years ago, but my English is not good, I couldn’t understand them, and they couldn’t understand me either. So I never went again.

[49-year-old woman taking care of her 77-year-old mother]

In addition to language and cultural barriers, navigating the complex insurance policies and healthcare system is dauting for most caregivers.

We are not eligible for public nursing homes, and we certainly can’t afford private nursing homes either. I don’t know what to do when her situation gets worse. I don’t know who to ask. We truly have no idea; we just go by one day at a time

[59-year-old taking care of 74-year-old mother]

From distress to poor quality of life and coping strategies

Poor quality of life and adverse health outcomes:

Most (17 out of 18) caregivers lived with care-recipients, prolonged caregiving stress had resulted in poor quality of life and adverse health outcomes in caregivers, who frequently mentioned ‘tired’, ‘fatigued’ and ‘exhausted’.

I haven’t had a good night of sleep for a very long time. Every day, from the moment I wake up till midnight when I go to bed, I hardly have time to rest.

[48-year-old woman taking care of her 91-year-old father]

There was a pervasive sense of loneliness and loss. Some caregivers showed obvious signs of depressive symptoms and or physical impairment.

I often feel sad, I sometimes cry quietly for no reason. I haven’t told anyone about this. I feel lonely and I don’t know what’s waiting for us.

[58-year-old women taking care of her 73-year-old husband]

Positive and negative coping:

All caregivers understood that Alzheimer’s disease was incurable, and their stressful caregiving would continue. They took different coping strategies in response to such prolonged caregiving duties. Most tended to respond passively with a sense of pessimism and none has made an advanced care plan. When asked about their future plans, the most typical responses were ‘I don’t know, I’ll just go day by day.’ Or ‘I don’t really want to think about it’.

A small number of participants responded more positively and used prayer and physical activity for stress reduction. Some were able to find small pleasures in life.

Every Sunday morning, we have a nanny come over for half a day. This is my time to relax. I usually go to a park, have a cup of tea, and enjoy the sun. That’s the best time of the week.

[48-year-old woman taking care of her 88-year-old father-in-law]

Their resilience and strength were motivated by the value of filial piety and pride in caring for older parents. For example, nursing homes were not considered a viable option.

I can’t take my mom to a nursing home. That would be the end of everything. It’s immoral to send your parents to a nursing home. I can take care of her as long as I’m able to walk

[59-year-old man taking care of his 86-year-old mother]

Suggestions for intervention programs

Nearly all participants welcomed the idea of a support program and they specifically needed information, social, and emotional support. Though many caregivers needed support, many were unaware of available resources. They specifically ask for two kinds of information or support. One is information about Alzheimer’s disease, its treatment, and how to best care for the patient.

I did research online (about AD), but there is too much information, and I can’t tell which one to trust.

[53-year-old woman taking care of her 90-year-old father]

The other kind of information needed is the available resources. For example, respite care, in-home support service, how to look for nursing homes for people with ADRD, and how to prepare a advanced care plan. One caregiver asked us for a list of local resources they can use.

They were eager for a support group of their own, a group of Chinese American dementia caregivers who shared similar experiences and cultural background.

It would be really nice to have a support group for us, maybe on WeChat, since every Chinese uses WeChat. Only people with the same experience can understand us, it’s hard to find such a friend in the neighborhood.

[70-year old man taking care of his relative]

Discussion

Principal findings

Guided by a socio-ecological model, this study depicts caregiving experience of Chinese American dementia caregivers. Through their own words, the participants described their distress from intensive daily caregiving. Many had exhibited mental and physical impairment, and few had used any formal service. Negative coping with a sense of powerlessness was pervasive. Language barriers, continuous isolation, and frustration in navigating the healthcare system exacerbated their physical and emotional exhaustion. Caregivers also expressed a strong desire for culturally appropriate caregiving intervention, especially a program that could improve their caregiving mastery, link them to social services, and connect them with peer caregivers for social support.

Data interpretation and policy implication

Our study adds to the existing limited literature on Chinese American dementia caregivers. Some of our findings were similar to earlier studies on dementia caregivers of racial and ethnic minorities. For example, intensiveness of caregiving and how cultural norms shape caregivers’ perceptions of dementia, appraisals of stress, coping strategies, and help-seeking behavior (Liu et al., 2020; Meyer et al., 2015; Sun et al., 2012; Ta Park et al., 2019; Zhan, 2004). This study provides additional observations that need to be discussed further.

First, care-recipients in this study had high rates of comorbidities and more advanced ADRD-related symptoms; their caregivers reported alarmingly heightened emotional and physical exhaustion and impairment. Prior studies on immigrant dementia caregivers suggested that because of misperception and stigma of ADRD and limited access to health services, diagnoses of ADRD in racial and ethnic minority population often occur at a more advanced stage; consequently their caregivers would ensure more stressful caregiving burden (Rote et al., 2019; Rote & Moon, 2018). Therefore, there is an urgent need for culturally tailored intervention to increase awareness of ADRD, promote screening and diagnosis of ADRD, and provide support for the very vulnerable and underserved caregivers.

Second, these caregivers hardly seek social support as many had a shrunk social network when they transitioned into the role of dementia caregivers. They also used very little formal services due to language barriers, unfamiliarity with welfare service, and frustration from navigating the system. Chinese Americans living in ethnic enclaves like Chinatowns in large cities such as New York or San Francisco, often have a denser community cohesion and easier access to linguistically appropriate services, thus having more ‘caregiving resilience’ (Liu et al., 2021). By contrast, most caregivers, like the ones reported in the current study, lack a formal or informal community structure and therefore are more socially isolated. The lack of services for immigrants in none-enclaves require more attention and resources.

Third, participants have expressed a desire for culturally tailored support programs and offered specific suggestions. These data would inform developing pragmatic interventions for these caregivers to improve their caregiving skills, enhance self-care, and facilitate access to available services. Our proposal to develop and implement pragmatic interventions does not dimmish the importance of structural intervention; instead we advocate for reforms of immigration and insurance policies, so that health services are more accessible to immigrant and minority caregivers. However, recognizing the lengthy process of policy change, which often comes after shifts in social norms, we call for more immediate actions such as the proposed pragmatic interventions that may have direct and immediate effects on reducing caregiving stress and alleviating adverse health outcomes in these vulnerable dementia caregivers and their care-recipients.

Limitations

Several limitations should be noted for the study. First, most participants were recruited through a community-based organization and lived in Washington DC metropolitan. The findings from the study may not reflect other Chinese American dementia caregivers in the country, as there are vast differences in policies and public health services for immigrants and dementia caregivers across states and regions. Second, participants in this study were the ones who were willing to share their experiences, and most of them have lived in the U.S. for a long period of time; those who were more marginalized or overwhelmed were not reached in this study. Third, the conceptual framework presented in the study was based on the findings from the current study and might not be extrapolated to dementia caregivers of other cultures or other settings.

Conclusion

To conclude, this study, based on qualitative interviews with Chinese American dementia caregivers, reports their caregiving experience and distress process. They mostly live in isolation and lack support; some have exhibited depressive symptoms. A sense of loss and hopelessness were pervasive, but they were eager for any program that could improve their caregiving skill, self-care, and access to services. The data from the study will inform culturally appropriate intervention for this vulnerable population. We call for policies and resources that support immigrant and minority dementia caregivers.

Funding

The study was funded by the Virginia Center for Alzheimer’s and Related Diseases Research Award Fund (PI: YAH) and Pilot Grant from Emory Roybal Center for Dementia Caregiver Mastery (P30AG064200) (PI: YAH). We thank all participants in the study.

Footnotes

Disclosure statement

No potential conflict of interest was reported by the authors.

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