Caregiving involves assisting care recipients with activities of daily living, such as eating/bathing, and instrumental activities of daily living, such as paying bills (Alzheimer's Association, 2019). Unpaid dementia caregivers provide approximately 18.5 billion hours of care in the United States each year for persons with dementia (Alzheimer's Association, 2019). Caregivers experience higher rates of depression, stress, and other mental health issues (vs. non-caregivers) (Mausbach, Chattillion, Roepke, Patterson, & Grant, 2013; Pinquart & Sorensen, 2003; Schulz, O'Brien, Bookwala, & Fleissner, 1995).
There is little dementia caregiving research among Vietnamese American individuals, who are the fourth largest foreign-born Asian population, and have lower English proficiency and educational attainment compared to other immigrant/native-born populations (Migration Policy Institute, 2018). In Vietnamese culture, caregiving for older adults with dementia so they can live at home with their family is expected of children and family members, and filial piety, stigma of dementia, and normalization of memory loss in old age are also common (Ta Park, Nguyen, et al., 2018; Ta Park, Tran, et al., 2018). Asian American individuals (the most rapidly growing racial population category in the United States overall) underutilize mental health services even though there is a demonstrated need (Ta, Juon, Gielen, Steinwachs, & Duggan, 2008), such as having high posttraumatic stress disorder rates (Kinzie et al., 1990; Mollica, Wyshak, & Lavelle, 1987).
The trauma that Vietnamese American individuals experienced related to the Vietnam War as well as their difficult migration experiences (e.g., refugee camps) and other barriers (e.g., low socioeconomic position) amplifies their mental health risk as caregivers (Ta Park, Nguyen, et al., 2018; Yeo, UyenTran, Hikoyeda, & Hinton, 2002). Many Vietnamese refugees were members of business or merchant class families whose only route of escape was by small boats (Ta Park, Tran, et al., 2018). These refugees experienced a great deal of trauma due to pirate attacks, starvation, and other traumas as they made their way to various refugee camps in other countries. Many Vietnamese refugees also spent years in overcrowded refugee camps with unsanitary conditions and experienced malnutrition.
As such, a culturally tailored intervention for Vietnamese dementia caregivers was developed to address the risk of caregiver-related mental health issues (Mausbach et al., 2013; Pinquart & Sorensen, 2003; Schulz et al., 1995), the barriers to help-seeking (e.g., filial piety, stigma), and lack of culturally appropriate caregiver programs. Programs that are “culturally tailored take into account the beliefs, values, and circumstances of specific cultural groups. Developing programs in a culturally relevant context can improve their effectiveness, particularly in traditionally underserved communities” (Agency for Healthcare Research and Quality, 2012, para. 1). The current intervention was modeled after a home-based psychoeducational skill-building intervention designed to empower Chinese American dementia caregivers by teaching them adaptive coping skills. Lower stress and higher positive affect were found for participants in the intervention compared with caregivers in the control condition who received only educational materials about dementia care (Gallagher-Thompson et al., 2007). A previous study with 12 Vietnamese refugees suggested the appropriateness and effectiveness of cognitive-behavioral therapy (CBT) for Vietnamese American individuals (Hinton et al., 2004), but CBT studies with Vietnamese American dementia caregivers have yet to be performed.
The current study sought to address the gap in dementia caregiving intervention research for Vietnamese American individuals by developing and examining the effectiveness of a culturally tailored intervention compared to usual educational materials to reduce stress and depression in Vietnamese American dementia caregivers. Results of changes in quantitative measures of depression and caregiver burden are reported elsewhere (Ta Park et al., in press). The current article reports Vietnamese American dementia caregiver participants' experiences and perceptions of their participation.
Study Design and Procedures
A convenience sample of self-identified Vietnamese American dementia caregivers were randomly assigned to the intervention (“Our Family Journey”; OFJ) (n = 30) or control condition (educational materials) (n = 30). A randomized controlled trial has a minimum of four elements: (a) use of controls who receive no treatment, conventional treatment, or placebo; (b) use of random assignment of treatment to be tested; (c) avoidance of investigator bias by masking procedures; and (d) development of a sound ethical basis for the conduct of research (Campbell & Stanley, 1966). Participants heard about the study through one or more of the following: Vietnamese media (radio/television/newspaper) (33.9%), community organizations (27.4%), word of mouth (19.4%), social services agency (5%), providers (5%), and unknown (9%). Trained bilingual and bicultural Vietnamese American research staff screened potential participants to determine their eligibility. Inclusion criteria were: (a) self-identified as Vietnamese American; (b) can read/write/speak Vietnamese and/or English; (c) were at least 18 years old; (d) were caregivers for a family member or loved one with dementia or neuro-cognitive disorder for ≥6 months; (e) provided care ≥12 hours per week; (f) screened positive for depression or stress; (g) agreed to random assignment to the intervention or control group; and (h) resided in the San Francisco Bay Area. Institutional Review Board approval was received from the University of California at San Francisco.
A total of 112 contacts were made, including 88 who were eligible and 24 who were not eligible to participate. Of the 24 ineligible persons, eight did not care for a family member with dementia, three were not stressed, two did not self-identify as Vietnamese, and one had plans to move out of the area in the next 6 months. The remaining 10 ineligible persons cited other reasons, such as seeking caregiver services. Of the 88 who were eligible, 28 did not participate due to the following reasons: staff could not reach them after three attempts and they did not return staff's phone calls (n = 15); felt “too stressed” to participate (n = 7); because of a family conflict (i.e., did not want them to talk about their care recipient having dementia) (n = 2); could not drive to the sessions (n = 2); their care recipient passed away (n = 1); or they moved out of the area (n = 1). The remaining 60 eligible participants signed an informed consent and completed a sociodemographic questionnaire and pre-tests that assessed their stress/burden and depression during a home visit, at a community center, or library conducted by trained research assistants.
All participants were informed that the purpose of the study was to determine which method (OFJ or educational materials) would be better in decreasing caregiver distress and enhancing the quality of life of Vietnamese American individuals who care for persons with dementia or significant memory loss. For simplicity purposes, participants and staff referred to the study as a “program.” Pre-testing took approximately 45 to 60 minutes. Enrolled caregivers were then randomly assigned to either the face-to-face, 4-week cognitive behavioral psychoeducational skill training intervention (OFJ), or only received existing usual educational materials on dementia and caregiving stress in English and/or Vietnamese. A sealed envelope system and the Efron (1971) biased coin process were used for randomization. Each participant received $100 at the conclusion of the study, following completion of the post-tests.
Active Intervention Condition: Psychoeducational Cognitive Behavioral Intervention
Caregivers assigned to the intervention (OFJ) participated in four weekly face-to-face, Vietnamese-language sessions in small groups (“cohorts”) of two to eight participants at a local community center/organization. The mean size of the cohort was 4.8 participants. The sessions were conducted in Vietnamese because all caregivers were fluent in Vietnamese, with most being monolingual in Vietnamese. The OFJ facilitator was bicultural and bilingual in Vietnamese and, coincidentally, was also a dementia caregiver (Q.V.). Action plans (i.e., home practice) were assigned at each session, and a colorful, easy to read workbook encouraged active practice of techniques between sessions that were culturally tailored for this population. The four intervention sessions each lasted approximately 75 to 90 minutes. The mean and median number of days the post-test was conducted after the pre-test were 96.04 (SD = 46.1 days) and 92 (range = 20 to 187 days), respectively.
The intervention was based on Gallagher-Thompson et al.'s (2007) In-Home Behavioral Management Program for Chinese American dementia caregivers, which has six components: (a) education about dementia and caregiving stress, appraisal, and coping; (b) techniques for managing troublesome and disruptive behaviors of the care recipient; (c) how to cope with one's own negative feelings and thoughts associated with caregiving; (d) developing skills to improve communication with other family members and health care professionals; (e) behavioral activation techniques to increase pleasurable events in daily lives of the caregiver and care recipient; and (f) end-of-life medical decisions.
Based on earlier findings from the qualitative study with Vietnamese mental health professionals (Ta Park, Nguyen, et al., 2018), this intervention was culturally tailored for Vietnamese American individuals, and some of the content was condensed to be able to offer it in four weekly sessions. These modifications were consistent with the key elements of the original intervention. Examples of the cultural adaptations included: use of the Vietnamese language; adaptation of the concept of “self-care” in that by focusing on self-care, one would better be able to care for the care recipient, which was critical to address the concern of feeling “selfish”; centering the discussions on the family unit or a collectivist approach (vs. an individualist approach), discussing filial piety and stigma related to dementia and help-seeking; and incorporating Vietnamese culture, values, and customs in the discussions (e.g., pleasurable activities included eating pho, a traditional Vietnamese soup; drinking cá phê dá, a traditional Vietnamese coffee; singing karaoke).
To supplement the OFJ manual, four YouTube videos were developed to correspond to the four sessions of the intervention to provide an additional way to teach caregivers about dementia caregiving in culturally appropriate ways (i.e., having Vietnamese individuals act out the scenes in respectful and culturally familiar ways). The YouTube videos were developed in Vietnamese with English subtitles. All OFJ caregivers who completed the OFJ received a certificate of completion.
Control Condition: Usual Educational Materials
Educational materials on dementia comprised resources available from the Alzheimer's Association's (2018) website: (a) basics of Alzheimer's disease—the diagnosis, stages of the disease, what to expect, current treatments, and how the local Alzheimer's Association can help; (b) stages of Alzheimer's disease; (c) safety—safety issues/tips; and (d) stress relief—symptoms of caregiver stress and ways to be a healthy caregiver. Local resources for Alzheimer's disease and mental health were also provided. After the pre-tests were conducted, the educational materials were given to all caregivers in Vietnamese, except for one OFJ participant who received it in English. The mean and median number of days the post-test was conducted after the pre-test were 85.24 (SD = 51.2 days) and 78 (range = 34 to 232 days), respectively.
Eligibility Screening Questions. To determine potential participants' eligibility, caregivers were screened for stress and depression. Depression was screened using the Vietnamese version of the Patient Health Questionnaire-9 (PHQ-9), which was found to have good convergent validity, good external construct validity, and excellent reliability with Vietnamese individuals (Nguyen et al., 2016). With a possible score of 0 to 27, a score of 5 suggests mild depression.
Caregiver stress was determined using a set of six questions: the first four asked caregivers to respond yes/no about whether they (1) felt overwhelmed; (2) had crying spells or felt like s/he often needed to cry; (3) been angry/frustrated as a result of caregiving; or (4) felt cut off from family/friends. Question 5 asked them to rate their current level of stress on a 1 to 10 scale (score ≥6 is a positive response). Question 6 asked them to rate their current health now compared to last year (better, the same, or worse), with a rating of worse categorized as a positive response. To qualify for the study, caregivers had to have two or more positive responses to the six questions (Gallagher-Thompson et al., 2015). These screening questions were not used as baseline data as separate measures were used.
The sociodemographic questionnaire included gender, age, marital status, education, employment, household income, relationship to care recipient, living arrangement with care recipient, and religion.
A participants' perceptions and experiences questionnaire was administered to both “active” and “control” treatment arms as it is important to also evaluate whether controls benefitted from the educational materials, as this method is less expensive and easier to implement than the intervention (Cheng, Au, Losada, Thompson, & Gallagher-Thompson, 2019; Gallagher-Thompson et al., 2007). The questionnaire included five quantitative and three qualitative questions about the program (i.e., OFJ or educational materials).
The quantitative questions included: (1) “On a scale from 1 to 5, how satisfied were you with the program?” Likert responses included 1 (very unsatisfied) to 5 (very satisfied); (2) “On a scale from 1 to 5, how helpful was the program for you?” Likert responses included 1 (not very helpful) to 5 (very helpful); (3) “Overall, which of the skills listed below, that you may or may not have learned in the program that you participated in, do you think you will use in the future?” Skills included: mindful breathing and other relaxation techniques; practicing at least four pleasant activities each day; communicating with the care recipient; using the behavioral log; asking for help from family and friends when needed; communicating more effectively with health care providers; planning for end-of-life issues using the benefits from an advance health care directive; none; and not applicable; (4) “Would you recommend this program to a friend?” Responses included yes, no, and not sure; and (5) “How confident do you feel in caring for your loved one at the present time?” Likert responses included 1 (not very confident) to 5 (very confident).
For the qualitative open-ended questions, participants were asked to (1) describe what they learned from this program; (2) provide their thoughts and/or suggestions on how to improve the program for the future; and (3) share anything else about their experience with the program.
Translation Process and Validity
The PHQ-9 had been previously translated to Vietnamese and was publicly available. The following materials were translated into Vietnamese: screening eligibility questions; informed consent; caregiver burden/stress questions; intervention materials; and local information about mental health and Alzheimer's disease resources. The World Health Organization's (2018) process of translation and adaptation of instruments, such as forward and backward translation methods, was used to attain conceptually equivalent Vietnamese language versions of the English materials, which were translated to be cross-cultural and conceptual, rather than linguistically/literally equivalent. Bilingual and bi-cultural Vietnamese research staff conducted the translations.
Descriptive analyses, which were performed using STATA version 15.1, examined the distribution, central tendency, and dispersion of each variable, and were presented as frequency data. Because the sample size was small, Fisher's exact test was used to examine whether the proportions of the learned skills categories were different between the intervention and control conditions.
Qualitative data were transcribed in Vietnamese and translated to English. Content analysis (Krippendorff, 2013), using a directed content analysis approach (Hsieh & Shannon, 2005), was used in this evaluation. A coding dictionary for the questions was developed based on the interview questions by one rater (V.M.T.P.), and two trained raters (V.M.T.P., G.Y.) independently used this as a guide in the analysis. Similar coding categories were observed, suggesting good inter-rater reliability. Raters then compared the results of their coding and resolved any discrepancies. Raters examined the coded responses for indications of overarching meaning and agreed on three major abstract concepts as themes to describe the major implications of caregivers' responses (Ryan & Bernard, 2003). Differences between themes expressed by caregivers in both conditions were compared.
Overall, most participants were female, married or living with a partner, had a college education, and reported being a member of a formal religion (Table 1). Mean age of caregivers during the time of recruitment was 57.1 years (SD = 11.1 years). More than one half were caring for parents with the remainder caring for spouses, children, a relative, or another loved one. Although participants were randomly assigned to the intervention or control conditions, there were significant differences regarding employment (p = 0.01); specifically, there were more OFJ caregivers who were retired (vs. controls) and more control caregivers who were working full-time (vs. OFJ). Many caregivers in both groups did not report their household income (33.3% and 43.3%, respectively). Thus, it is unclear whether there was a true statistically significant difference in household income, especially given the small sample size. There were no statistically significant differences in education between groups (p = 0.49). All participants were born in Vietnam. Most (95%) reported Vietnamese as their only primary language and the remaining said that Vietnamese and another language were their primary languages. Six caregivers took care of more than one care recipient.
Sociodemographic Characteristics of Vietnamese Dementia Caregivers (N = 60)
For all questions, greater proportions of OFJ caregivers (vs. controls) reported positive/affirmative responses (Table 2). Fisher's exact tests indicated that there were significant differences between OFJ and control caregivers in reporting satisfaction with the intervention (OFJ or educational materials only), on how the program was helpful, and the number of skills that were refined/learned from their participation. There were significantly more OFJ caregivers who reported that they were satisfied with the intervention compared to control caregivers (p = 0.03). There were significant differences between OFJ and control caregivers in reporting whether the “program was helpful” (p = 0.001), with all OFJ caregivers reporting that the intervention was very/somewhat helpful compared to 76.7% of controls. In addition, 96.7% of OFJ caregivers reported that they had refined/learned three or more new skills from the intervention compared to 36.6% of control caregivers (p < 0.001). When asked about participants' “confidence level in taking care of a family member with dementia,” all OFJ caregivers reported that they were very (60%) or somewhat (40%) confident compared to 50% and 36.7% of control caregivers, respectively; however, this result was not significantly different (p = 0.15).
Vietnamese American Dementia Caregivers' Survey Responses (N = 60)
Skills Refined/Learned From Participation
Fisher's exact tests indicated significant between-group differences for all reported skills learned from participation in the study (Table 3). There were notable differences between groups in the proportion of those reporting skills that they had learned, ranging from 33.4% to 70% difference by skill (i.e., “using behavioral log” [16.7% for controls] and “mindful breathing and other relaxation techniques” [100% for OFJ caregivers]). For example, the proportion of caregivers who reported learning “communication skills with the care recipient” was 70% higher in the OFJ (93.3%) compared to the control (23.3%) group.
Skills Refined/Learned From Participation (N = 60)
Four themes were identified in the responses (Table 4), and the codes that illustrated those themes were grouped for OFJ and control caregivers.
Theme 1: Effect on the Caregiver. In response to the request, “Please describe what you have learned from this program,” 75% of OFJ caregivers mentioned the changes they experienced in their own personal well-being. The most frequent response of any of the categories indicated that they had learned to take care of themselves more effectively. A major emphasis was their ability to reduce their stress level by relaxing, meditating, or listening to music. Several made the connection that they were taking care of themselves so that they could better take care of their care recipient. Others mentioned protecting themselves from exhaustion or eating better to protect their health.
Similar to OFJ caregivers, some control caregivers believed a major result of their participation was the effect it had on their well-being. They also learned to take better care of themselves and had more positive emotions, as demonstrated by the responses of one third of the group. Another effect was that the majority of OFJ caregivers reported attending to their feelings and feeling more positive emotions (e.g., letting go of anger; practicing forgiveness and acceptance, especially of the care recipient's behavior). Several mentioned feeling calmer, more joyful/cheerful, or optimistic.
Theme 2: Caregiving Skills. The second most common theme in the responses for OFJ caregivers was the skills they learned, especially in communicating with the care recipient. Several mentioned the patience they had developed and ability to avoid arguing with the care recipient. The other skill learned in the OFJ that was mentioned frequently was how to ask for help, especially from other family members. As a result of the skills they learned, more than one half of OFJ caregivers indicated they felt more confident in dealing with the care recipient and the stresses of caregiving. Seven control caregivers also reported learning similar skills from the reading materials.
Theme 3: Change in Knowledge Level. A major theme for OFJ caregivers was the increase in knowledge, especially the knowledge about dementia among older adults. They specifically mentioned what they had learned from other participants. A few mentioned knowledge of the available services as a positive result of the class. Twenty percent of control caregivers reported that they had gained positive knowledge from the materials they had been provided. However, an equal proportion reported negative comments about their knowledge level (i.e., three mentioned not reading the materials).
Theme 4: Response or Recommendations for Changing the Intervention. Caregivers' reactions to the experience itself took several forms in the responses to the question about what they learned as well as two subsequent questions, one asking for their thoughts or suggestions about how to improve the program, and a second asking if there was anything else they would like to share about their experience. The most common reaction was expressing thanks and appreciation for it, and the second most common was that it was helpful. Suggestions for improving the model most commonly took the form of expanding it in some way, such as recruiting new participants, extending the schedule or locations, or broadcasting it. Approximately 17% of OFJ caregivers specifically asked for more sessions in their written evaluation. There were a few other suggestions, such as providing snacks or better videos.
Number of Codes Identified in the Responses for the Open-Ended Qualitative Questions and Selected Participant Quotes
Control caregivers also expressed their appreciation for the program, with some saying it made them feel more joyful. Suggestions for change included sharing between caregivers.
The current findings suggest that Vietnamese American dementia caregivers benefitted from the intervention. The majority of OFJ caregivers reported in both the structured and open-ended questions that they felt more confident and gained better skills in taking care of themselves and their loved one in a variety of ways. This study was culturally responsive and effective on many aspects. For example, the myriad outreach approaches, including Vietnamese-language media, community-based organizations, flyers, and word of mouth, were critical. The culturally appropriate translation made the materials more interesting and easier to read (as commented by some participants). OFJ helped in reducing the stigma as evidenced by caregivers' willingness to share their struggles and adopt new practices/perspectives. Caregivers appreciated the in-person delivery of the program as they were able to make friends and form an informal peer support network at the end of the OFJ. In addition, the key to help OFJ caregivers open up was to address the filial piety tradition, cultural stigma, and other barriers that had forced them to bear the caregiving burden alone for so long. In becoming more aware of and able/confident in verbalizing their needs/challenges, they also gave more accurate assessments of their level of caregiving stress/depression. Although this may potentially increase some of their stress/depression post-test scores, it nonetheless showed that true needs and solutions will surface when culturally appropriate services are in place. In addition, given the increase in positive outcomes of some control caregivers, it appears that the educational materials on their own could be useful resources. Although it would be a less expensive approach to use only the written resources in an intervention for Vietnamese American caregivers, it would provide them the important opportunity to interact with and learn from other caregivers from similar backgrounds in an environment that affirms their shared values where their new skills are practiced and reinforced in a culturally appropriate way.
Strengths and Limitations
To the authors' knowledge, this is the first study that developed and examined a cognitive-behavioral skills, evidence-based intervention for Vietnamese American dementia caregivers. A systematic review of the literature on differences in caregiving experiences of African American, Latino American, and Chinese American individuals reveals that of 47 intervention studies reviewed, only 11 reported cultural tailoring (Napoles, Chadiha, Eversley, & Moreno-John, 2010); thus, a major strength of the current study is the cultural tailoring including the translation process built into the model (Ta Park, Nguyen, et al., 2018). Other strengths include its randomized control methodology and lack of participant attrition. Limitations include its geographical location, the shortness of the intervention, and a small group size for one of the OFJ cohorts (n = 2). In addition, although the team had previously identified spirituality as an important aspect that should be integrated in the intervention (Ta Park, Nguyen, et al., 2018), due to resource and time limitations, the study could not expand on this component.
Informal caregivers who provide most of the day-to-day care to persons with dementia (Alzheimer's Association, 2019) are highly stressed, and there are known negative impacts of caregiving on physical and mental health (Alzheimer's Disease International, 2019). Gerontological nurses are a vital part of helping address caregivers' needs in that they have firsthand knowledge and experience of the person with dementia and the caregiver—in inpatient or outpatient settings—so they are in a unique position to observe and subsequently provide recommendations to improve quality of life of one or both persons (Robert Wood Johnson Foundation, 2015). To make appropriate recommendations, it is necessary to assess the situation: how much distress and/or depression is the caregiver experiencing? What resources are caregivers currently using for coping—social, emotional, financial? What other resources can be used? To address these questions, gerontological nurses need to become familiar with common assessment tools; some are described herein, for others, gerontological nurses may refer to the Family Caregiver Alliance (2006). Gerontological nurses can become familiar with local resources by consulting their local Area Agency on Aging as well as the national Alzheimer's Association (access https://www.alz.org).
Another important practice implication of the current findings is that Vietnamese dementia caregivers generally prefer to learn about dementia and caregiving in Vietnamese (Ta Park, Nguyen, et al., 2018); thus, linguistically and culturally appropriate materials are needed as well as access to in-person translators or translator services to facilitate communication. Moreover, cultural competency in gerontological/geriatric nursing, defined as the “ability to give health care in ways that are acceptable and useful to older persons because it is congruent with their cultural background and expectations” (McBride, 2019, para. 7), would play a critical role in reducing the health and health care disparities experienced by Vietnamese dementia caregivers. In addition, the findings demonstrate that some basic caregiving information may be learned through print materials; other aspects, such as practical skills for managing stress and difficult behaviors, are well learned in a small group context. These findings suggest that training in the model, as well as dissemination of materials, could enhance gerontological nurse practice in the future.
The finding that this psychoeducational approach is helpful in decreasing stress and depression among Vietnamese American caregivers provides important resources for nurses working with similar populations. Recognizing the culturally prescribed expectations of filial piety (Ta Park, Tran, et al., 2018), nurses in their role as health educators (Kemppainen, Tossavainen, & Turunen, 2013) can help give caregivers permission to care for themselves and teach them important self-care methods (e.g., relaxation exercises), communication techniques with their care recipients (e.g., avoid arguments, use distraction), and how to ask for assistance from other family members, to mention a few. This approach to cross-cultural caregivers' health may also be a valuable curriculum resource for cross-cultural nursing or geriatric nursing courses.
Given the positive evaluations of the current approach, the potential next steps include the possibility of extending the intervention to other populations of Vietnamese American dementia caregivers and examining its generalizability. This study's intervention may be a model for interventions with other cultural populations. Future iterations of the study should consider asking caregivers about their help-seeking behaviors and include other family caregivers.
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Sociodemographic Characteristics of Vietnamese Dementia Caregivers (N = 60)
|Characteristic||n (%)||p Value|
|Total||Intervention Group||Control Group|
| Female||52 (86.7)||26 (86.7)||26 (86.7)|
| Male||8 (13.3)||4 (13.3)||4 (13.3)|
| Single/never married||6 (10.2)||3 (10.3)||3 (10)|
| Married/living together||4 3 (72.9)||20 (69)||23 (76.7)|
| Separated/divorced/widowed||10 (16.9)||6 (20.7)||4 (13.3)|
| Less than high school||15 (25)||7 (23.3)||8 (26.6)|
| High school diploma/GED||14 (23.3)||9 (30)||5 (16.7)|
| Some college||7 (11.7)||2 (6.7)||5 (16.7)|
| College or higher||24 (40)||12 (40)||12 (40)|
| Full time||14 (23.3)||2 (6.7)||12 (40)|
| Part time||13 (21.7)||7 (23.3)||6 (20)|
| Leave of absence/not employed||22 (36.7)||13 (43.3)||9 (30)|
| Retired||11 (18.3)||8 (26.7)||3 (10)|
|Caregiver's household income||0.041|
| Less than $12,000||9 (15)||8 (26.7)||1 (3.3)|
| ≥$12,000||28 (46.7)||12 (40)||16 (53.3)|
| Missing or declined to state||23 (38.3)||10 (33.3)||13 (43.3)|
|Relationship to care recipienta,b||0.095|
| Spouse/parent||15 (27.3)||6 (22.2)||9 (32.1)|
| Child||30 (54.5)||13 (48.2)||17 (60.7)|
| Relative/other||10 (18.2)||8 (29.6)||2 (7.2)|
|Living with care recipient||0.284|
| Yes||38 (63.3)||21 (70)||17 (56.7)|
| No||22 (36.7)||9 (30)||13 (43.3)|
|Member of a formal religion||0.519|
| Yes||48 (80)||23 (76.7)||25 (83.3)|
| No||12 (20)||7 (23.3)||5 (16.7)|
| Vietnam||60 (100)||30 (50)||30 (50)|
| Vietnamese||57 (95)||30 (100)||27 (90)|
| Vietnamese and otherc||3 (5)||0 (0)||3 (10)|
|Age at recruitmenta||0.193|
| Mean (SD)||57.1 (11.1)||58.7 (10.5)||55.5 (11.7)|
| Range||35 to 81||36 to 76||35 to 81|
Vietnamese American Dementia Caregivers' Survey Responses (N = 60)
|Question||n (%)||p Value|
|Intervention Group (n = 30)||Control Group (n = 30)|
|Satisfaction with the program||0.029|
| Very satisfied||26 (86.7)||20 (66.7)|
| Somewhat satisfied||2 (6.7)||5 (16.7)|
| Neither satisfied nor unsatisfied||0 (0)||4 (13.3)|
| Somewhat unsatisfied||0 (0)||1 (3.3)|
| Very unsatisfied||2 (6.7)||0 (0)|
|Program was helpful||0.001|
| Very helpful||28 (93.3)||15 (50)|
| Somewhat helpful||2 (2.7)||8 (26.7)|
| Neither helpful nor unhelpful||0 (0)||2 (6.7)|
| Somewhat unhelpful||0 (0)||1 (3.3)|
| Very unhelpful||0 (0)||4 (13.3)|
|Number of new skills refined/learned from the programa||<0.001|
| 0||0 (0)||14 (46.7)|
| 1||0 (0)||3 (10)|
| 2||1 (3.3)||2 (6.7)|
| 3+||29 (96.7)||11 (36.6)|
|Would recommend the program to a friend||0.195|
| Yes||29 (96.7)||25 (83.3)|
| No||0 (0)||0 (0)|
| Not sure||1 (3.3)||5 (16.7)|
|Confidence level in taking care of a family member with dementia||0.152|
| Very confident||18 (60)||15 (50)|
| Somewhat confident||12 (40)||11 (36.7)|
| Neither confident nor unconfident||0 (0)||4 (13.3)|
| Somewhat unconfident||0 (0)||0 (0)|
| Very unconfident||0 (0)||0 (0)|
Skills Refined/Learned From Participation (N = 60)
|Statement||Intervention Group (%)||Control Group (%)||χ2||p Value|
|Using behavioral log||53.3||16.7||8.865||0.003|
|Communicating more effectively with health care providers||66.7||33.3||6.667||0.010|
|Planning for end-of-life issues||76.7||26.7||15.017||<0.001|
|Asking for help from family and friends||80.0||36.7||11.589||0.001|
|Practicing at least four pleasant activities each day||83.3||16.7||26.667||<0.001|
|Communication skills with the care recipient||93.3||23.3||—||<0.001|
|Mindful breathing and other relaxation techniques||100||33.3||—||<0.001|
Number of Codes Identified in the Responses for the Open-Ended Qualitative Questions and Selected Participant Quotes
|Themes and Codes||Responses (n)||Selected Participant Quotes|
|Intervention (I) Group||Control (C) Group|
|Theme 1: Effect on the Caregiver|
| Personal care||23||11||“Learn how to reduce stress and take care [of] myself better.” (I)
“Be aware of the stress triggers which affect my behaviors.” (C)|
| Positive emotion||22||9||“I think that the program is very good and it helps me feel more joyful (happier). I really appreciate it.” (I)
“Don't lose my temper, don't argue, don't pay attention to something unusual. Be more sympathetic/empathetic toward the patient.” (I)
“Stay calm in every situation.” (C)|
| Time and activities||1||3||“I learn how to arrange my schedule to take care of my loved one and take a rest, e.g., walking, breathe or swim.” (C)|
|Theme 2: Change in Caregiver Skills|
| Communication||11||4||“Know how to take care [of] myself, ask others to share the tasks. Not overcommit like before.” (I)
“Time-sharing and ask for help from other family members and train them how to take good care.” (C)|
| Confidence||16||3||“[I] know how to deal with the patient. Know and understand about the disease. Know what I did wrong toward the patient.” (I)|
|Theme 3: Change in Knowledge Level|
| Knowledge: positive||15||6||“Help me understand more about dementia/Alzheimer, make it much easier for me to empathize with the patient, and don't feel stressed like I used to.” (I)
“Always be positive to overcome the obstacles when mentally or physically tired.” (C)|
| Knowledge: negative||0||6||“I don't have much time to complete the readings.” (C)|
|Theme 4: Response or Recommendations for Changing the Intervention|
| Reaction to the “program”||14||9||“I'm very satisfied because I was able to read the package of this program. It's very helpful for taking care of dementia patients.” (C)|
| Suggestions to improve the “program”||6||9||“Learn from other participants' experiences; need more time for sharing.” (I)|
| Suggestions to expand the “program”||19||4||“Encourage the program to recruit more participants.” (I)
“Continue weekly or regular meetings to practice and discuss learned lessons.” (I)
“Provide support and services for caregivers in Vietnamese.” (C)|