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. Author manuscript; available in PMC: 2025 May 1.
Published in final edited form as: Aging Ment Health. 2025 Jan 5;29(4):631–638. doi: 10.1080/13607863.2024.2449141

Two-year follow-up of dementia caregivers after a digital health intervention WECARE: a mixed-method study

Y Alicia Hong a, Kang Shen a, Hae-Ra Han b, Kenneth Hepburn c, Lily Wang d, Huixing Kate Lu e, Van Ta Park f, Iris Chi g
PMCID: PMC11957924  NIHMSID: NIHMS2065011  PMID: 39757693

Abstract

Objectives:

Few digital health interventions for dementia caregivers, especially for racial and ethnic minorities, include long-term follow-ups. This study assessed the feasibility of two-year follow-up of the Wellness Enhancement for Caregivers (WECARE) intervention for Chinese American dementia caregivers, examined the changes in psychosocial health and explored future strategies.

Method:

A mixed-method study was conducted two years after the initial WECARE intervention trial. Participants completed an online survey and phone interviews. Quantitative and qualitative data were analyzed complementarily.

Results:

Eighteen of 24 participants completed the survey and 15 participated in interviews. Caregivers reported deteriorating conditions of care-recipients and increased caregiving burden, but their depressive symptoms and life satisfaction remained lower compared to baseline. Participants highlighted sustained benefits of WECARE, including stress management, improved communication, and a sense of community through group chats. They expressed a need for ongoing social and information support.

Conclusion:

This study demonstrates the feasibility of long-term evaluation for digital interventions like WECARE and emphasizes the need for continuous support. Sustained benefits underscore the potential of culturally tailored digital health interventions for underserved dementia caregivers. Future efforts should integrate ongoing resource access to enhance caregivers’ long-term well-being.

Keywords: Alzheimer’s Disease and related dementia, family caregivers, behavioral intervention, long-term follow-up, Chinese Americans

Introduction

More than 6.5 million Americans aged 65 and older live with Alzheimer’s Disease and related dementias (ADRD) and the number is projected to reach 13.8 million by 2060 (Alzheimer’s Association, 2024). More than 11 million family caregivers provide an estimated 16 billion hours of care to people with ADRD each year (Alzheimer’s Association, 2024). Caring for a family member with ADRD is a prolonged, stressful, and intensive process. These family caregivers have reported high rates of psychosocial distress, depressive symptoms, and anxiety (Schulz et al., 2020, 2021; Schulz & Martire, 2004; Spillman et al., 2020). Significant health disparities exist when comparing minority and immigrant dementia caregivers to their White and native-born counterparts (Aranda et al., 2021; Liu et al., 2021; Rote et al., 2019; Rote & Moon, 2018). The literature suggests that caregivers in minority and immigrant families tend to enter their caregiver roles with poorer health conditions, and take on significantly more demanding caregiving roles because their care-recipients are more likely to have later stages of ADRD (Youn et al., 1999). Furthermore, these caregivers are more likely to live with care recipients and less likely to use formal services or receive extra support (Liu et al., 2008; Rote & Moon, 2018; Ta Park et al., 2018, 2019). As the U.S. demographic shifts older and more diverse, minority and immigrant populations will comprise 42% of the senior population in the next two decades (Johnson Jr & Parnell, 2017; Wilkins et al., 2020). There is an urgent need to develop and evaluate effective and easy-to-adopt digital interventions for these underserved caregivers.

Within a growing number of digital interventions to improve psychosocial wellbeing of dementia caregivers, there are two major literature gaps. First, there is a significant a lack of culturally tailored interventions for racial/ethnic minority and immigrant caregivers (Aranda et al., 2021; Gitlin et al. 2018; Graham-Phillips et al., 2016; Miyawaki, 2020; Sun et al., 2014). For example, Asian Americans are the fastest growing racial group in the U.S. having grown by 81% from 2010 to 2020 according to the latest Census (Pew Research Center, 2021a). They accounted for 7% of the population in 2020, with projections to reach 12% in 2050 (Colby & Ortman, 2015). Data aggregation of Asian Americans often obscures significant health disparities within the subgroups (Chen Jr et al. 2022). Nearly 70% of Asian Americans are foreign born, and those with limited English proficiency are marginalized (Pew Research Center, 2021b). This socially marginalized and linguistically isolated population has been missing in the current literature of ADRD research including caregiving interventions (Lai, 2010; Sun et al., 2012).

The other literature gap is that while digital interventions have been effective in the short-term, few have reported their long-term effects (Chi & Demiris, 2015; Faieta et al., 2022; Saragih et al., 2022). Studies that have reported multi-year follow-ups were mostly from in-person or telephone-based interventions (Livingston et al., 2014; Töpfer et al., 2021; Wilz et al., 2017). Data on evaluating feasibility of long-term follow-up of digital health interventions, especially social media-based interventions for dementia caregivers are rather limited.

To address the literature gaps, our team developed the Wellness Enhancement for Caregivers (WECARE), a digital intervention designed for Chinese American dementia caregivers, delivered via a popular social media app of WeChat (Hong et al., 2022). Our first pilot in 2022 demonstrated high levels of feasibility, acceptability, and preliminary efficacy in improving psychosocial outcomes among these caregivers (Hong et al., 2023). In 2024 we completed the 2-year follow-up of WECARE with the following objectives: (1) To evaluate the feasibility of long-term follow-up, (2) assess the changes in psychosocial health outcomes over 2 years, and (3) gather qualitative insights into participants’ life experience and explore future intervention strategies.

Methods

The WECARE intervention

The 7-week WECARE intervention was developed to reduce caregiving burden, decrease distress, and enhance the psychosocial well-being of Chinese American family caregivers of persons living with ADRD. Its protocol development and key features were detailed elsewhere (Hong et al., 2022). The program was all in Chinese as the target users were Chinese Americans with limited English proficiency. By subscribing to the WECARE official account, participants received 6 culturally tailored multimedia articles on their WeChat accounts each week for the first 6 weeks and 4 in the final week for a total of 40 articles. Each week focused on a theme. The seven major themes included (1) facts about dementia and caregiving; (2) enhancement of caregiving skills; (3) effective communication with health care providers, care partners, and family members; (4) problem-solving skills for caregiving stress management; (5) stress reduction and depression prevention; (6) practice of self-care and health behaviors; and (7) social support and local resources. All multimedia articles required 3–6 min of read time. Embedded in the articles were pictures, short video clips, and downloadable forms; all articles were culturally tailored for the target population and accompanied by audio recordings in case some older caregivers preferred listening to audio recordings over reading texts. Three moderated group meetings were held on Zoom at weeks 3, 5, and 7 to facilitate social networking. Participants could also use the built-in functions of ‘group chats’ in WeChat for additional networking and peer support. The official account of WECARE had a backend database that managed intervention delivery and tracked user activities (Hong et al., 2022).

Participants and recruitment

Participants in the study met the following criteria: (1) self-identify as Chinese or Chinese Americans and can read Chinese, (2) at least 21 years old, (3) currently living in the United States, (4) using WeChat, and (5) providing care at least 10 h a week for a family member or loved one with Alzheimer disease, dementia, or other neurodegenerative conditions. All participants were recruited from two sources. One source was through our community partner, a community-based organization that serves Chinese Americans in the greater Washington, DC metropolitan area. A recruitment flyer was distributed through social media and email newsletters. The other source was the Collaborative Approach for Asian Americans, Native Hawaiians, and Pacific Islanders Research Education registry (Ta Park et al., 2021). Interested participants contacted a designated phone number for more information and screening. Those who met the participation eligibility learned more about the study and were invited to participate. Participants who completed the 7-week intervention plus the baseline and the first follow-up surveys received a gift card of $100. Those who completed the second follow-up survey and qualitative interview 2 years later received another gift card of $50.

Ethics approval

The study protocol was approved by the Institutional Review Board of George Mason University (IRB number IRB#1849712). All eligible participants had a one-on-one online meeting or phone call with a research staff who explained the study procedure and answered all questions. All participants provided verbal informed consent before they started the study.

Data collection procedure

A total of 24 participants were enrolled for the WECARE pilot trial in 2022. After the informed consent, participants completed an online baseline survey and then subscribed to the WECARE official account via their WeChat app. A ‘group chat’ was established on WeChat during the intervention to enhance social networking and peer support. After the 7-week WECARE intervention, all participants continued having access to the program content and the group chat remained active. Three to 5 weeks after the intervention, or 12 weeks from the baseline, 23 out of 24 participants (94%) completed the first follow-up survey. Approximately 24 months after the baseline, the 23 participants from the first follow-up were invited to complete another follow-up; 18 (75%) of them completed the follow-up survey online and 15 of them completed a qualitative interview. All qualitative interviews were conducted on Zoom with cameras off and lasted 30 to 45 min each. Two researchers fluent in Chinese (YAH and KS) conducted all the interviews. 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. All surveys and interviews were conducted in Mandarin or Cantonese. Participants who completed the WECARE intervention and first follow-up survey received a gift card of $100; participants who completed the second follow-up survey and the optional qualitative interview received a gift card of $50.

Measures

The feasibility of the long-term follow-up of WECARE was assessed with the retention rates at the 2-year follow-up and users’ feedback in qualitative interview. The preliminary efficacy of the intervention was assessed by the changes of the three psychosocial health outcomes over time.

  1. Depressive symptoms were assessed by the Center for Epidemiologic Depression Scale (CES-D) 10-item (Andresen et al., 1994). Participants were asked to rate whether they experienced symptoms associated with depression the past week (0 = no and 1 = yes) with a total score ranging from 0 to 10 with a clinical cutoff point of 4 as an indicator of elevated depressive symptoms (Irwin et al., 1999). The CES-D has been used to monitor and identify trajectories of depressive symptoms and has been validated with Chinese populations (Cheng & Chan, 2005; Chin et al., 2015). The Cronbach α for depressive symptoms at baseline was .809.

  2. Caregiving burden was assessed by the Zarit Burden Interview (ZBI). The 12-item ZBI is one of the most reliable measures of caregiver burden in the literature. Each item has 5 response categories from ‘never’ to ‘nearly always’ with individual scores from 0 to 4 for each item (Bédard et al., 2001). Across the 12 items, the total ZBI score has a range of 0–48 with a cutoff point of 13 for community-dwelling caregivers (Gratão et al., 2019). ZBI has been validated in Chinese populations (Ko et al., 2008; Lu et al., 2009). The Cronbach α for ZBI at baseline was .824.

  3. Life satisfaction was assessed by the Satisfaction With Life Scale (SWLS) (Diener et al., 1985). The SWLS contains 5 items and uses a 7-point Likert-type scale from 1 (strongly disagree) to 7 (strongly agree). The SWLS assesses the individual’s evaluation of his or her life by using the person’s own criteria (e.g. ‘In most ways, my life is close to my ideal’). It has been validated in Chinese older adults and Chinese dementia caregivers (Au et al., 2020). The Cronbach α for SWLS at baseline was .915.

In addition, demographic characteristics of participants were assessed in the baseline survey, including age, sex, marital status, education, employment status, years of living in the United States, English proficiency, health status, and having difficulty paying for the basics. Care-recipient’s characteristics assessed included age, sex, relationship to caregiver, and living arrangement; their functional status was measured by activities of daily living (ADL) and instrumental activities of daily living (IADL) which were assessed at baseline and two follow-ups (Katz, 1983; Lawton & Brody, 1969).

After the survey was completed, an initial analysis of the survey data was performed to understand the current conditions of the caregivers and their care-recipients. Then, qualitative interviews were conducted for an in-depth understanding of the long-term effect of WECARE and their life experiences in the past two years. Based on the survey data and prior qualitative research in this population (Hong et al., 2024), an interview guide was developed that covered the following major domains: (1) care-recipient’s status and update, (2) caregiver’s wellbeing and coping, (3) use of WECARE program and feedback, and (4) suggestions for future programs.

Data analysis

Quantitative data from surveys were entered into Stata. First, frequency analysis was conducted to understand the status of caregivers and care-recipients. Then paired t tests were used to compare pre-post differences in psychosocial health outcomes. Two sets of comparison, i.e. baseline line vs. first follow-up, baseline vs. second follow-up, were conducted. The statistical significance was set as a p value ≤.10. Given the small sample size, we calculated effect sizes for the health outcomes (Sullivan & Feinn, 2012). The small sample size also limited the power for stratified analysis, so we did not conduct multivariate analysis to examine the independent relationship between the outcome variables and independent variables such as demographics and user engagement.

The notes and excerpts from the transcripts of qualitative interviews were translated into English for data analysis. Qualitative data were then entered into word processing software. Thematic content analysis was performed following the procedure outlined by Ryan and Bernard: identifying themes, building codebooks, marking texts, constructing models (relationships between themes), and testing these models against empirical data (Ryan & Bernard, 2003). Each transcript was coded independently by two researchers who conducted the interviews. Coding themes were developed from the interview guide and new themes emerged during the coding process (Joffe & Yardley, 2004; Ryan & Bernard, 2003).

Quantitative and qualitative findings were then converged and analyzed comparatively and complementarily. A matrix of participant characteristics and health status from quantitative data as well as major themes, quote excerpts, and coder’s observations from qualitative data were prepared to facilitate the discussion within the research team. The findings from different sources were compared to see if they agree, silent, or disagree (Green et al., 2015). Synthesized themes were developed to answer the research questions. Discrepancies were discussed until a consensus was reached.

Results

Care-recipient’s conditions and impacts on caregiver

Table 1 presents the demographic characteristics of participants and their care-recipients at baseline, 3-month, and 24-month follow-ups. Care-recipients’ mean age was about 81 years, and about half were female. Most (>60%) of them lived with their caregivers, two third of whom were children. These care-recipients had lower levels of ADL (mean score = 11 and IADL (mean score = 20). Out of 18 participants in the 2-yr follow-up, 2 reported that their care-recipients had passed away and therefore no functional status was reported.

Table 1.

Sample characteristics at baseline, 3-mon follow-up, and 24-mon follow-up.

Characteristics Baseline (n = 24) 3-months FU (n = 23) 24-months FU (n = 18)
Caregiver (CG)
 Age (years), mean (SD) 59.58 (11.99) 59.87 (12.17) 60.67 (10.66)
 Female sex (%) 17 (71) 16 (70) 15 (83)
 Married or living with a partner (%) 21 (88) 20 (87) 15 (83)
 Years of living in the U.S., mean (SD) 23.4 (10.5) 23.3 (10.8) 23.6 (11.8)
 Limited English proficiency (%) 13 (54) 7 (30) 6 (33)
 Speaks Chinese or Mandarin at home (%) 22 (92) 23 (100) 18 (100)
 Has difficulty paying for basics (%) 11 (46) 10 (44) 6 (33)
Care recipient (CR)
 Age (years), mean (SD) 81.38 (8.65) 81.52 (8.81) 82.72 (8.32)
 Female sex (%) 13 (54) 12 (52) 8 (44)
 CP and CG live together (%) 16 (67) 16 (70) 11 (61)
 Relationship to CG
  Spouse (%) 7 (29) 6 (26) 5 (28)
  Child (%) 16 (67) 15 (65) 11 (61)
  Other relative or friend (%) 1 (4) 2 (9) 2 (11)
 ADLa score, mean (SD) 11.54 (9.47) 11.78 (9.40) 12.06 (11.02)*
 IADLb score, mean (SD) 20.08 (5.64) 20.26 (5.57) 20.25 (5.45)
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Note: n = 16 as two care-recipients passed away. ADL = Activities of daily living. IADL = Instrumental activities of daily living.

*

p < 0.05.

Qualitative interviews suggested that all care-recipients’ conditions had deteriorated. Those who remained home required home aides in addition to their family caregivers. Caregivers experienced different kinds of stress associated with these changes.

For the caregivers who lost their loved ones, the painful loss was mixed with guilt and numbness.

My mother passed away 3 months ago at age 88. In addition to Alzheimer’s, she had diabetes and pancreatic cancer. My brother blamed me for not doing enough (sobbing). But for 20 years, I’m the only one taking care of my mom; my brother only visited a couple of times a year, I have done my best! [Sobbing and long pause]. You know, sometimes, after many nights without sleep, I lost my temper and yelled at her. I could not control myself, I’m a human [long sobbing]. After her passing, I was numb for 2 weeks, I didn’t know what to do.

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

For the caregivers whose loved ones moved into a nursing home or assisted living, the stress shifted from caregiving to care-coordination and financial burden.

My husband moved to an assisted living 6 months ago as we could not take care of him at home anymore. It costs $6,000 a month and is the only place we can afford. It takes 2 bus transfers and more than an hour to visit him each time. This place is not a nursing home and does not have doctors. If my husband needs to see a doctor, I need to make an appointment and move him to the doctor’s office, and that’s very very hard.

[71-year-old-woman taking care of her 71-year-old husband]

Of those still living with their caregivers, one moved back to Taiwan and one moved back to China due to high caregiving costs in the U.S. However, after living in the States for decades, the transition was quite challenging.

Here in Taiwan, we can afford a full-time home aide. I can finally have a breather and sometimes I work at a buffet to make some extra money. It’s tough moving back after living in the States for 20 years and my husband had lived in the States for 40 years. He doesn’t have any family or friend in Taiwan now…I don’t want to attend my high school reunion as I don’t want to lose face and none of my friends know about my husband’s situation.

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

Most caregivers continued living and taking care of loved ones with ADRD whose situation had deteriorated in the past two years. All these care-recipients required home aides, but caregivers still needed to do a lot of work.

My wife can’t eat by herself and has lived on a stomach tube for two years. A home aide comes every day. It’s helpful, but I still need to do a lot of work. I’m the only one who knows her situation the best and understands her mumbling.

[85-year-old-man taking care of his 86-year-old wife]

Caregiver’s current status and changes of psychological health outcomes overtime

As shown in Table 1, the mean age of the caregivers was about 60 years, and the majority (70–80%) were female. About 54% had limited English proficiency and 46% had difficulty paying for the basics; these numbers dropped to roughly 33% and 33%, respectively, at the second follow-up, suggesting those more vulnerable were lost to follow-up.

Table 2 demonstrates the changes of psychosocial health outcomes at three assessment points. Comparing baseline to the first follow-up, all three health outcomes, i.e. depressive symptoms, caregiving burden, and life satisfaction showed statistically significant improvements with effect sizes of 0.89, 0.48, and 0.55, respectively. These effects diminished slightly in the 2-yr follow-up with effect sizes of 0.33, 0.26, and 0.29, respectively. Given the small sample size in the second follow-up (n = 18) these effects were not statistically significant. Figure 1 depicts the changes of these health outcomes over time. After a marked improvement from baseline to the 3-month follow-up, these outcomes moved slightly downward at the 24-month follow-up, but all numbers were still better than the baseline.

Table 2.

Caregivers’ psychosocial wellbeing: Comparing baseline, first and second follow-ups.

Domain (range) Baseline (n = 24) mean (SD) First FU (n = 23) mean (SD) Second FU (n = 18) mean (SD) Effect size (First FU-Baseline) Effect size (Second FU-Baseline)
Depressive symptoms (0–10) 5.74 (2.56) 3.35 (2.72) 4.63 (3.03) −0.89*** (−1.37, −0.40) −0.33 (−0.83 to 0.18)
Caregiving burden (range 0–48) 25.78 (7.19) 21.91 (6.69) 22.56 (7.92) −0.48* (−0.90 to −0.04) −0.26 (−0.76 to 0.24)
Life satisfaction (range 0–30) 11.35 (6.66) 14.83 (7.11) 13.67 (8.66) 0.55** (0.10, 0.98) 0.29 (−0.19 to 0.75)
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Note: Two participants did not report data for depression, caregiving burden.

*

p < 0.05,

**

p < 0.01,

***

p<.005.

Figure 1.

Figure 1.

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Changes of caregivers’ psychosocial wellbeing over time.

Many caregivers were older adults themselves and had to manage their own chronic conditions in addition to taking care of their loved ones with ADRD.

I’m taking care of my 93-yr old father-in-law, he was diagnosed with Alzheimer’s 7 years ago. I don’t know what has happened to me, I myself often forget to take my diabetes medication.

[61-year-old-man taking care of his 93-year-old father]

Some caregivers had to juggle caregiving stress, financial constraints, and working. Such juggling often left them with zero chance of rest or no personal time.

My husband had a seizure last year and had been bedridden since then. We had to hire a home aide to take care of him. I need to work full time to keep insurance so he can be covered. His insurance covers only 80% and we can’t afford the 20% out-of-pocket cost. I’m not eligible for Medicaid because I work; but if I don’t work I don’t have the insurance to cover my husband. It’s such a dilemma. I need to work and to take care of my husband. We can only afford a home aide 3 days a week, my son takes care of him 2 days and I cover evenings and weekends.

[54-year-old-woman taking care of her 64-year-old husband]

Most caregivers shared that the uncertainty about the future was a major source of stress, for themselves and their loved ones with ADRD. Yet, none had made an advanced care planning (note: it was a component ‘taught’ in the WECARE program). The cultural taboo on talking about death kept most participants from any conversation on this topic. Their typical response was ‘when it comes, it comes’ and ‘how could we plan for the future, there is a destiny’.

I take it one step at a time. I do not have a plan for the future, and I do not know how to plan for the future. It depends on his condition which I can’t control.

[54-year-old-woman taking care of her 92-year-old father]

Many participants shared the stress related to uncertainty about future.

My mom’s situation has gotten a lot worse in the past two years. She still can eat but doesn’t know how to chew unless we stimulate her; so every meal takes 2 hours. She doesn’t sleep well at night and always wakes up, so she needs sleep medicine in addition to AD medicines. I can’t send her to a nursing home; she won’t be taken good care of there. But I’m 64 now and often forget things, I wonder maybe I have Alzheimer’s too. I don’t want to find out as there is no answer or solution. Finding out an answer only makes me stressed.

[64-year-old-woman taking care of her 85-year-old mother]

Reflection of WECARE and suggestions for future program

Eighteen out of 24 participants (75%) responded to our invitation to a 2-year follow-up survey and 15 of them also completed qualitative interviews, suggesting a high level of feasibility of long-term follow-up and trust of participants. All shared their overall positive feedback of WECARE program despite the intervention being nearly 2 years ago. For many, this was their first time and only time participating in a structured program to learn about ADRD caregiving. The most commendable program components included ADRD facts and demystification, caregiving tips especially the short video clips on how to deal with problem behaviors, typical medical terminologies, checklist for doctor’s appointments, and local resources.

I think the program is very helpful. I like its systematic approach and it gave me a good understanding of Alzheimer’s and how to deal with it. I also like that it’s very flexible, and I can read it, watch it, or listen to it whenever I want instead of staying on a meeting for a few hours. We can also communicate with people with similar background and experience and that’s very comforting.

[55-year-old-woman taking care of her 80-year-old mother]

Most participants stayed in the ‘group chat’ on WeChat, which was created during the WECARE intervention to facilitate social networking of these caregivers. Though not a very active group, participants were grateful that they could befriend peers of similar experience and backgrounds.

This group gave me a lot of strength. I feel I’m not the only one doing this alone. I know there are many people out there with similar experiences.

[63-year-old-woman taking care of her 85-year-old mother]

With many positive comments, some participants identified the limitations of WECARE and offered specific suggestions.

The WECARE was helpful. But I forget a lot of it over time. It would be better to do it every once a while to refresh and reinforce what we’ve learned. It would be very helpful if there is a channel or platform that’s for us, so we can ask questions whenever we run into a situation. For example, I may need to know more about hospice in a near future, and I hope I know where to go for my answer.

[54-year-old-woman taking care of her 92-year-old father]

Discussion

Our data suggest that it was feasible to conduct a long-term follow-up of the digital health intervention, WECARE, as 75% of participants (18 out of 24) completed the second follow-up survey 24 months after the baseline. Our data also indicate that though intervention effects diminished over time, all health outcomes (i.e. depressive symptoms, caregiving burden, and life satisfaction) remained better than at baseline. It is worth noting that over the past two years all care-recipient’s conditions had deteriorated and their caregivers had to take on more intensive caregiving responsibilities while most of them were older adults themselves with multiple chronic conditions (Hong et al., 2023).

The high retention rate and long-term effects of WECARE suggest that culturally tailored, social media-based intervention like WECARE could make a positive and sustainable impact on underserved Chinese American family caregivers of persons with ADRD. A social media-based intervention like WECARE is easy to adopt and continue using, and as the program is delivered via the popular social media app used by the target users daily. It’s also easy to build a social network using the existing functions of the app. Most of the WECARE participants remained active in the ‘group chat’ to stay communicative with fellow caregivers.

In addition to the positive aspects of the WECARE program, the data also revealed that participants still experienced limited support and aggravated social isolation, difficulty in navigating the healthcare and welfare system, and none had made an advanced care plan. These findings suggest more work is needed, for example, to create a dedicated channel or platform for continuous and reliable information and social support.

Family caregivers of persons with ADRD experience prolonged and intensive distress from complex caregiving and other life responsibilities; the level of stress they experience only increases over time. Family caregivers from underserved communities endure higher rates of psychosocial distress as they face substantial obstacles to social and health services due to cultural and structural barriers (Hong et al., 2023). Pragmatic interventions or programs focused on psychosocial education and caregiving intervention can mitigate caregiving stress and improve quality of life of their family caregivers but these programs are insufficient compared to the obstacle they face and daily struggle they experience (Cheng et al., 2019). A long-term solution requires structural intervention at policy levels, including integrating caregiving services into health services, easy access to health services, and targeted outreach in marginalized and immigrant communities, and changing social norms on ADRD and advanced care planning (Dilworth-Anderson et al., 2020; Gitlin et al. 2018; Sun et al., 2014).

Several limitations should be noted for this study. First, the preliminary efficacy data or changes of the psychosocial health outcomes need to be interpreted with caution due to the limitation of the single-arm study design and small sample size. Second, with 75% participants remaining at the 2-year follow-up, there might have been a self-selection bias as some more vulnerable participants (e.g. those with limited English proficiency) were lost to follow-up. The changes in sample characteristics also suggest that extra caution is needed when interpreting the findings. And third, given the pilot nature of WECARE intervention, we did not have a control group, so the pre-post differences we observed might be due to testing effects. Future studies on digital interventions for underserved dementia caregivers should be evaluated with a more rigorous design with a larger sample size and a control group.

To conclude, this mixed-method two-year follow-up study represents one of the first efforts to report the feasibility of long-term follow-up of a digital intervention for underserved Chinese American dementia caregivers. It suggests the potential of achieving long-term effects within a caregiving intervention delivered digitally. As the US population shifts older and more diverse, culturally sensitive and linguistically appropriate digital interventions for underserved and minoritized populations are urgently needed. Future efforts should focus on integrating continuous support mechanisms and resource access to enhance the long-term well-being of this vulnerable population.

Acknowledgements

We thank our community partners and participants in the study.

Funding

The WECARE intervention was funded by the Virginia Center for Aging Alzheimer’s and Related Disease Research Award Fund. The 2-year follow-up study was funded in part by NIA Emory Roybal Center for Dementia Caregiving Mastery Pilot Grant (P30AG064200).

Footnotes

Disclosure statement

No potential conflict of interest was reported by the authors.

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