A culturally and linguistically appropriate telephone support intervention for diverse family caregivers of persons with dementia during the COVID-19 pandemic period

Abstract

Caregivers of persons with dementia (PWDs) were socially isolated with little support during the COVID-19 pandemic “Stay-At-Home” order in the United States. To enhance social and emotional connection for diverse caregivers, a culturally/linguistically appropriate telephone intervention provided compassionate listening, mindful breathing, and COVID-19 safety education. The study purpose was to understand caregiving challenges and to evaluate the intervention for caregivers during the early pandemic using a qualitative approach. Twenty-three caregivers participated in the intervention provided by bilingual research assistants for 3 months. Call logs were used to describe the caregivers’ dialogue. Thematic analysis identified (a) the challenges, including fear of coronavirus disease, providing around-the-clock care, and forced isolation and negative emotions; and (b) caregivers’ experience with the intervention, including connecting with the outside, relief from emotional stress, reliable COVID-19 information, and reinformed caregiving skills. Results suggest that the telephone support was of benefit to diverse caregivers of PWDs during the pandemic by promoting social connection and reducing emotional distress.

INTRODUCTION

The number of people who live with Alzheimer’s disease and related dementias (ADRD, here after dementia) has steadily increased in the United States. Approximately 6.5 million Americans suffered from dementia in 2021, and this number is predicted to reach 13.8 million by 2060 (Gaugler et al., 2022). These expanding numbers combined with the ongoing shortage of care providers, result in the current challenge: most of the caregiving responsibilities for persons with dementia (PWDs) fall upon family members, such as spouses and adult children. Over 11 million family members provide care for PWDs, struggling to cope with the progressive decline in cognition, functionality and/or behavior problems (Gaugler et al., 2022). These caregiving responsibilities result in high levels of stress, disturbed mood including depression, and decreased quality of life for caregivers (Bin Sallim et al., 2015; Joling et al., 2018; Liang et al., 2016; Liu et al., 2018). Thus, most dementia caregivers indicate a need for additional support and services such as counseling and respite care (Gaugler et al., 2017; Vandepitte et al., 2016).

As the outbreak of the SARS-CoV-2 virus (COVID-19) swept the globe (Tu et al., 2020; Wiersinga et al., 2020), the California COVID-19 ‘Stay-At-Home’ administrative order, effective on March 20th, 2020, significantly affected family caregivers of PWDs in the community (Cohen et al., 2020; Greenberg et al., 2020; Kasar & Karaman, 2021). Social services, including adult day centers, senior centers, support groups, and in-home services underwent temporary closure to minimize health risks during this time (Cohen et al., 2020; Kasar & Karaman, 2021; Masoud et al., 2021). Family caregivers were unable to rely on many key support services, particularly adult day care services for PWDs and in-home care services; thus, they were cut off from networks of support during the early pandemic, ‘Stay-At-Home’ order period, including services which were a major source of respite for them (Cohen et al., 2020; Zucca, Isella, Di Lorenzo, et al., 2021). As a result, these caregivers had to provide care for PWDs 24 hours a day while balancing all other responsibilities (Greenberg et al., 2020). In addition, caregivers had to cope with exacerbated cognitive and behavioral changes in their PWD family members caused by the lack of social interaction and isolation. These abrupt exacerbations in the PWD behaviors contributed to increasingly challenging situations for family caregivers (Savla et al., 2021; Zucca, Isella, Lorenzo, et al., 2021). Therefore, it was important to provide immediate emotional support to family caregivers while understanding the barriers to and facilitators of their psychological health during the COVID-19 pandemic.

Telephone calls served as an effective and COVID-19 safe method to interact with caregivers who had limited social contact and access to services including health care (Kasar & Karaman, 2021; Sitges-Macia et al., 2021). In response, a telephone-based intervention was developed to provide emotional support, need-based stress management skills, and COVID-19 safety information. This telephone-based intervention was a follow-up study from a prior parent study involving a culturally and language specific home-visit based intervention for diverse family caregivers of PWDs including compassionate listening and caregiving education completed before the pandemic. The purpose of the current study was to understand caregiving challenges during the COVID-19 pandemic among diverse family caregivers of PWD as well as to evaluate their experiences with the culturally and linguistically appropriate telephone intervention supporting caregivers’ emotional well-being during the early COVID-19 pandemic using a qualitative approach.

METHODS

Study Design

The study used a qualitative descriptive design to understand dementia family caregivers’ emotional challenges during the early COVID-19 pandemic and also assess their experiences with a culturally and linguistically appropriate telephone support intervention. Upon IRB approval in mid-March 2020, the research team started to implement the study procedure.

Participants and Setting

This telephone support intervention was a follow-up of the parent study (an in-persons, home-visit-based intervention completed before the pandemic). The eligibility criteria for participation in the parent study were: 1) adults aged 18 or older; 2) family caregivers of community dwelling PWD such as spouses, siblings, adult children including daughters-in-law, and adult grandchildren; 3) caregivers able to communicate in English, Spanish, Vietnamese, and/or Korean; and 4) caregiving experiences such as supervision or assistance for at least 3 months with a plan and intention for continuous caregiving. Care recipient (PWD) criteria included a diagnosis of dementia by a healthcare provider for at least 3 months before caregiver’s enrollment in the study without a plan for long-term care placement within 6 months. Thirty-six family caregivers of PWDs participated in the parent study conducted in 2018 and 2019 (Lee et al., 2019). Participants in the parent study were recruited from an ethnically diverse county in California. The IRB approved study flyers available in English, Spanish, Vietnamese, and Korean were posted in local ethnic grocery markets, senior health centers, adult day centers, assisted living retirement communities, and medical officies of which health care providers often see ethnic minority older adults (e.g. Latinx and Asians). The flyers were also distributed to support groups via non-profit organizations serving dementia caregivers.

The current telephone support intervention was conducted from April to June in 2020 during the early COVID-19 Stay-At-Home order in California. We reached out to the 36 family caregivers who completed the parent study. The research assistants (RAs), trained bilingual nursing students who implemented the parent study, called the participants, and provided information on the purpose of the telephone support study, procedures, potential risks, and benefits. Two caregivers expressed they were too busy to participate, and 11 caregivers did not respond to our calls. Twenty-three (64%) caregivers agreed to participate in the curent study. As detailed in Table 3, 86.9% of participants were female, and there were a similar number of English speakers, Spanish speakers, and Vietnamese or Korean speakers in this study. After participants gave verbal consent over the phone, the RAs provided the weekly telephone support intervention for 3 months.

Table 3.

Characteristics of family caregivers and their loved ones with dementia

	English speaking participants (N=7) Frequency (%)	Spanish speaking participants (N=8) Frequency (%)	Korean or Vietnamese speaking participants (N=8) Frequency (%)	All N= 23 Frequency (%)
Gender (female)	5(71.4)	8(100)	7(85.7)	20(86.9)
Mean age (range), years	67 (62-79)	56.5 (40-76)	58 (27-77)	60.2 (27-79)
Spouse	67 (62-79)	62.5 (43-76)	75 (72-77)	67.4 (43-79)
Adult Child	-	50.5 (40-60_	47.8 (27-590	49 (27-60)
Caregiver relationship with PWD
Spouse (wife or husband)	7 (100)	4 (50)	3 (37.5)	14 (60.8)
Wife	5 of 7 (71.4)	4 of 4 (100)	2 of 3 (66.6)	11 of 14 (78.5)
Adult child (daughter, son, or daughter in law)	0 (0)	4 (50)	5 (62.5)	9 (39.2)
Daughter	0 (0)	4 of 4 (100)	4 of 5(80)	8 of 9 (88.8)
Education
High School Completion	0 (0)	6 (75)	3 (37.5)	9 (39
More than High School Completion	7 (100)	2(25)	5 (62.5)	14 (61)
Health insurance
Yes	7 (100)	7 (78)	8 (100)	22 (96)
English proficiency, mean (SD)b	Not applicable	1.125 (0.83)	1.375 (0.74)	1.25 (0.77)
Time to live in US (range), years	Not applicable	29.57 (13-45)	28.14 (8-45)	28.85 (8-45)
Comorbidity Health condition (Yes)	3 (42.8)	1 (12.5)	3 (37.5)	7 (30.4)
Persons with dementia (N=23)
Gender (female)	3 (42.8)	3 (37.5)	6 (75)	12 (52.1)
Mean age (median, range) years	73.29 (73,63-81)	69.63 (77.5,41-88)	82.63(82.5, 76-90)	75.26 (79, 41-90)
Health Insurancea
Medicaid only	0	3 (37.5)	3 (37.5)	6 (26)
Medicaid + Medicare	0	4 (50)	2 (25)	6 (26)
Medicare only	7 (100)	1 (12.5)	3 (37.5)	11(47.8)
uninsured	0	0	0	0
Types of dementia
Alzheimer’s	6 (85.7)	5 (62.5)	6 (75)	17 (73.9)
Vascular	0	0	2 (25)	2 (8.6)
Lewy Body	1 (14.2)	0	0	1 (4.3)
Don’t know	0	3 (37.5)	0	3 (13)
Stage of dementia
Early	3 (42.8)	3 (37.5)	4 (50)	10 (43.4)
Middle	4 (57.1)	5 (62.5)	3 (37.5)	12 (52.1)
Late	0	0	1 (12.5)	1 (4.3)

^aMedicaid is a federal and state program that helps with health care costs for individuals with limited income while Medicare is a federal program that provides health coverage for individuals aged 65 or older and those having a disability no matter their income in the United States.

^bbEnglish proficiency was measured with 5-point Likert-type scale (4 = excellent, 0 = cannot speak English). Seven caregiver participants who were born in the United States were excluded in this mean calculation.

Telephone Support Intervention Procedure

Parent Study.

Before the COVID-19 pandemic, the principal investigator (J.L.), a nurse gerontologist and dementia caregiving researcher conducted a home-based intervention for culturally diverse family caregivers of community-dwelling PWDs (Le & Lee, 2021; Lee et al., 2021; Lee et al., 2019). She trained RAs to provide support-oriented interventions through visits to caregivers of PWD’s homes. The 4-week intervention consisted of education and compassionate listening. Education included three main topics: dementia caregiving, care resources, and stress management (e.g., mindful breathing exercises). In the home-visit intervention, multicultural caregivers identified a preferred language for communication and were matched with a trained RA who spoke the same language (English, Spanish, Vietnamese, or Korean). Research materials including caregiving education, community resources, and survey questionnaires were translated to respective languages by qualified translators and verified by those research team members who share the linguistic and cultural background (i.e., Spanish, Vietnamese, or Korean). Our findings of the parent study indicated that the participants reported a decrease in caregiving burden and depressive symptoms and an increase in self-efficacy (Le & Lee, 2021; Lee et al., 2021; Lee et al., 2019).

Current Study.

The research investigators including a geriatric nurse researcher, a geriatrician, a community-based participatory researcher, and a psychobiologist developed this telephone support intervention. We also adapted caregiving education and mindful breathing components from our parent study to provide emotional support and COVID-19 safety information as well as reinforce caregiving skills (e.g., stress management) for our previous participants. The caregiver was given the telephone intervention by the same trained RA who had visited them during the parent study and reestablished the relationship. In addition, the RAs received new training focusing on the COVID-19 safety recommendations by the Centers for Diseases Control and Prevention (CDC) as well as the telephone support intervention procedures.

These procedures are shown in Table 1. During the first call, the RAs followed a telephone script aiming to identify the caregivers’ emotional status and better understand the challenges caregivers were experiencing in this unprecedented pandemic period. Subsequent calls involved RAs providing support tailored to the caregivers’ individual responses to that initial script. This intervention also included sharing the CDC’s COVID-19 safety education. Additionally, the RAs reinforced practicing the skills, that were taught earlier during the parent study, including mindful breathing and communication techniques, that were taught earlier during the parent study. By using compassionate listening and psychoeducational methods, the caregivers were encouraged to share their feelings, and were provided support to cope with their emotional challenges (Kim, 2017).

Table 1.

Telephone Follow-up Support Intervention

Phone calls	Intervention
Initial call	Establish relationship with the caregiver and identify their emotional status and needs and challenges during the ‘Stay-at-Home’ order
	Mindful breathing/listening
	Education 1 (1) COVID-19 symptoms and related information for safety (2) Refresh how to do compassionate communication with persons with dementia (PWD)
Follow-up calls	Emotional support for caregiver
	Mindful breathing/listening
	Educations (1) Care resources available during the COVID-19 situation (2) Activities to do with PWD at home (3) Refresh how to do compassionate communication with persons with dementia (PWD) (4) Responses to other issues raised by caregivers
Final call	A short open-ended qualitative phone interview to evaluate satisfaction with the telephone-based support program during the early COVID-19 crisis.

Note. PWD = persons with dementia.

The calls lasted about 15 to 30 minutes in length on a weekly basis for 12 weeks during the ‘Stay-At-Home’ order. However, some participants were called more than once a week per their requests. The bilingual RAs recorded detailed call logs after each call that reflected the conversation with the participant. The lead researcher reviewed these call logs that were written in English to assure fidelity of the intervention protocol and made certain that the protocol was maintained by all RAs. In addition, individual advice was given to the RA by the lead researcher after assessing documentation of the visits. Specifically, the research team had weekly debriefing meetings to discuss the procedures in detail, develop a responsive support plan tailored to participants’ needs and challenges in their caregiving experience during the pandemic, and ensure the consistency in the intervention among RAs communicating with the participants in four different languages. Exit interviews (Table 2) were conducted during the final call to understand and document the participants’ experiences with this telephone intervention.

Table 2.

Exit Survey Questions

Please provide us your feedback upon the following questions.

1. How did you feel having this telephone call follow-up during the COVID-19 period? 2. What was the most helpful part of the calls to get you through the COVID-19 crisis? 3. What did you think of the information that we provided regarding COVID-19 symptoms and how to stay safe? 4. Did mindful deep breathing help your stress level? 5. Did the caregiving education by phone help remind you of the necessary communication skills to use with your loved one? 6. Please tell us anything that you want us to know to further support dementia caregivers.

Data Collection

Caregivers’ demographic data were derived from the parent study. Telephone support intervention data were collected through call logs by the RAs. Following the IRB’s approved procedure, the RAs asked the caregivers for consent to record the telephone intervention procedure. However, many participants preferred the RAs taking notes, rather than audio-recording the telephone intervention; thus, the research team pivoted to design a call log system to collect data. The study’s priority was to implement a culturally and linguistically specific intervention for diverse caregivers during a stressful period. Therefore, the RAs documented detailed logs to describe caregivers’ dialogue after each telephone session. To protect confidentiality, all personal identifiers were removed from the call logs. Post-intervention, a semi-structured exit interview was conducted to evaluate caregivers’ experiences with the telephone intervention. All identifying information was replaced by participant numbers to protect anonymity and to prevent any potential risk/discomforts.

Data Analysis

Thematic analysis (Boyatzis, 1998; Vaismoradi et al., 2013) was used to analyze the call logs documenting telephone intervention sessions and exit interviews. All de-identified logs were imported into Dedoose software, a qualitative and mixed data analysis tool (Dedoose, 2020). Call logs were written in English by bilingual RAs. The lead researcher (J.L.) and a graduate student (E.J.) provided training for the RAs to be competent to conduct analyses. The thematic analysis involved five steps. First, two RAs were paired to independently read these logs multiple times. Second, paired RAs independently created codes. Third, the team, including the lead researcher, a graduate student, and paired RAs, discussed definitions for codes, and the similarities and differences among the codes until consensus was reached. Related codes were grouped into categories that expressed similar experiences. Then, interrelationships among the categories were discussed and initial themes were identified. Finally, another qualitative researcher (H.J.K.). refined and finalized the themes with the team.

RESULTS

Table 3 presents the demographic characteristics of the caregiver participants and their corresponding PWD. A total of 23 family caregivers (7 non-Hispanic White, 8 Hispanic, 5 Korean, 3 Vietnamese) that provided care for community dwelling PWDs participated in the telephone intervention study. Caregivers’ mean age was 60.2 years (ranging from 27 to 79). Twenty caregivers were female and consisted of 11 spouses and 9 adult children (eight daughters and one daughter- in-law). Three male caregivers were the husbands of PWDs. Latinx, Korean, and Vietnamese participants had lived in the U.S. more than 29 years on average but rated their English proficiency as low or moderate (mean =1.25, SD=0.77, reference range, 0-4). All participants were living in urban/suburban areas. Half of the Spanish speaking caregivers (4 of 8, 50%) had Medicaid as their health insurance and one Spanish caregiver did not have any health insurance while the rest of caregivers had private health insurance. More than half of PWDs (12 of 23, 52%) had Medicaid service, which indicated low income.

This telephone intervention (e.g., compassionate listening, emotional support) provided an opportunity for family caregivers to talk about their feelings in each session. Three themes were identified to describe their emotional challenges during the early COVID-19 crisis: 1) fear of coronavirus disease, 2) providing around-the-clock care, and 3) forced isolation resulting in increased negative emotions. At the last session, family caregivers were asked to share their experience with participating in this telephone support study. The overarching theme from participants’ feedback was appreciating connecting with the outside world. Specific themes for each telephone intervention component included 1) relieved emotional stress, 2) reliable and helpful information to adapt to the pandemic, and 3) reinforced caregiving skills. These themes reflected their positive experiences with the telephone support provided by bilingual RAs who spoke the same language with their respective ethnic caregivers.

Caregiving Challenges during the COVID-19 pandemic and ‘Stay-At-Home’ Order period

Fear of Coronavirus Disease.

Most family caregivers reported immense fear of the exposure to Coronavirus disease, particularly considering that this study was conducted during the early stage of the pandemic. Caregivers were extremely worried about the possibility of spreading the SARS CoV2 virus to their PWDs if they themselves were to contract it. Caregivers were terrified that their PWDs, with advanced age and dementia, would not recover from Coronavirus disease once they were exposed. One Spanish-speaking caregiver reported that her greatest fear was that her husband would be unable to receive quality medical attention if he were to fall ill, no matter what the diagnosis. (Spanish-speaking caregiver, wife, age 56). At the same time, these caregivers were significantly distressed that their PWDs would be left alone with no one to care for them if they themselves were exposed to the virus. These fears drove caregivers to be hypervigilant about keeping up with the COVID-19 safety measures.

However, caregivers specifically mentioned that witnessing varying degrees of adherence to the COVID-19 safety guidelines in the community contributed to their increased fears. They reported that they followed precautions such as wearing masks and staying six feet apart from others, but they were greatly alarmed by others not abiding by the same guidelines. Media reports on the COVID-19 pandemic was another contributing factor to the caregivers’ ever-increasing feelings of anxiety and fear. Since it was the early phase of COVID-19 pandemic, daily media reports mainly focused on the rapidly deteriorating symptoms after exposure to the virus, the multiplying positive test results and deaths, and depletion of medical resources and healthcare workers all over the country. Public messaging for the pandemic was politicized and progress for a cure or vaccines seemed distant. Caregivers’ concerns were exacerbated due to the media and public crisis reporting, which made coping difficult. Another participant expressed difficulties with going to the grocery store. When she saw that people were not taking preventative measures, it made her feel anxious. Thus, when she arrived home, she disinfected all the items purchased and washed all her clothes before caring for her husband with dementia (Spanish-speaking caregiver, wife, age 43). Another caregiver described the fears and concerns expressed by many participants:

I am most scared of getting my mom infected. If I get sick, I will be infecting her. My kids help me by getting groceries for me so that I can stay home as well, since I am older and at higher risk too. I pray to God to give me the strength to take care of my mom.

(Spanish-speaking caregiver, daughter, age 60)

Another participant said that she became very anxious every time she heard an ambulance in the neighborhood thinking that one of her neighbors was sick with COVID-19 (Vietnamese-speaking caregiver, daughter, age 46). Overall, the caregivers described their lived experience of the early days of the pandemic as filled with fears, anxieties, and concerns regarding the COVID-19 disease and the risks of exposure and transmission.

Providing Around-the-Clock Care.

The ‘Stay at Home order’ resulted in caregivers providing around-the-clock care for PWDs without outside support. During the telephone intervention, family caregivers reported feeling overwhelmed with the responsibilities of becoming the sole caregivers for their PWDs. Although being main caregivers and dealing with the responsibilities was not new to them, the unprecedented pandemic forced most adult daycare centers and senior centers to temporarily close as well as limiting any face-to-face contact with other family members and friends. As a result, caregivers missed respite from caring responsibilities they previously had before the pandemic. One family caregiver said that she felt more tired since the lockdown, because now she was the only caregiver for her mother with dementia. Due to the COVID-19 pandemic and the Stay-at-Home order, her siblings stopped visiting their mother. She was also afraid of having others in her home and tried to do everything on her own. Although her mother’s dementia had not changed much, she herself became sleep-deprived, mainly because of the physical burden of caregiving without any breaks (Vietnamese speaking caregiver, daughter, age 46). Other caregivers shared similar experiences related to constant caregiving day and night:

I have been very stressed. I do not have time to do anything else but take care of my mom all day since she is no longer at daycare anymore.

(Spanish-speaking caregiver, daughter, age 52)

I have to take care of my mom and dad. In addition, I’m the boss at work, so my employees rely on me. Everyone seems to turn to me for answers. It left me with a lump in my throat.

(Korean-speaking caregiver, daughter, age 57)

Having to shift to around-the-clock caregiving and increased responsibilities, caregivers expressed feeling overwhelmed and stressed. Significantly, many participants described the physical and mental toll of their increased caregiver burdens during the early days of the pandemic.

Forced Isolation Resulting in Increased Negative Emotions.

Participants stated that forced social isolation caused strong feelings of disconnectedness, loneliness, and frustration for both themselves and their PWDs. The respite they relied on prior to the pandemic, through adult daycare centers, other family members, or support groups completely disappeared. Family caregivers were not allowed to continue many activities that previously helped them relieve the burden and stress of caring for their PWDs as the main caregivers. PWDs suddenly lost their established routine and were also left to cope with sudden changes due to the ever-shifting pandemic situation.

Caregivers said that they looked forward to any opportunities to talk to someone since the lockdown. They found themselves appreciating the people around them more because of the isolation and subsequent loneliness, and they reported feeling bad about asking for help with errands and grocery shopping. Caregivers expressed their emotional distress resulting from the pandemic:

I have felt depressed and have cried more since forced to stay home. I hate being in the house all the time. I used to like to go out a lot. I hate being stuck at home.

(Spanish-speaking caregiver, daughter, age 60)

I do feel depressed, but I know how to control my depression and get myself back up. Since I have been feeling lonelier, I have tried to call my daughters.

(English-speaking caregiver, wife, age 71)

Caregivers also experienced increased stress and frustration due to the isolation resulting from the pandemic. Feeling stressed and frustrated was not new to these caregivers, who were used to dealing with PWD cognitive impairment and unpredictable behaviors. However, the caregivers themselves were already “stretched thin” by the global health crisis and its consequences. Their compromised coping strategies and mechanisms affected how the caregivers responded to PWD. The caregivers reported that their stress threshold was lowered, causing them to become more sensitive and easily irritated by PWD and their daily routine. One caregiver mentioned she sometimes felt angry because of the overwhelming number of tasks to do every day. Even when she finally had time to rest, her husband with dementia disrupted her break by turning on a television. He then forgot to turn off the TV even after constant reminders to do so. She understood that it was not his fault, but it was difficult to not be irritated when it happened (English-speaking caregiver, wife, age 71). An adult daughter described how her whole family became extremely frustrated and upset when her mother with dementia, whose delusion and fear about having thieves in the house, obsessively and uncontrollably locked all doors and used tools such as strings to tie them up (Korean-speaking caregiver, daughter, age 59).

I am very frustrated these days, so I had to go out with a mask this week. I feel so irritated whenever I see my husband whose memory is just so poor. So, sometimes I would avoid talking with him about anything.

(Korean-speaking caregiver, wife, age 72)

Another caregiver said that she still became impatient with her husband at times, even when she knew that she should not, and was working very hard to be patient (English-speaking caregiver, wife, age 79). From frustration, impatience, anger, and stress, caregivers expressed higher degrees of caregiving fatigue as the pandemic isolation led to loneliness and the loss of social supports.

Participants’ Experience and Feedback for the Telephone Support Intervention During the Pandemic

The feedback from caregivers for the telephone support was very positive. Caregivers’ experience with each telephone support intervention component were summarized in Table 4.

Table 4.

Caregivers’ Feedback on the Telephone Support Intervention at Exit Interviews. Questions

Components	Caregiver’s Feedback
Emotional support by compassionate listening	Increased social connection Relieved stress Relieved depressive symptoms
Mindful breathing exercise	Useful tool to reduce stress and anxiety
COVID-19 education	Reliable information Helpful to adapt to pandemic
Refresh caregiving skills	Reinforced to practice caregiving skills

Appreciating Connecting to the Outside World.

All caregivers felt that these short phone calls allowed them to freely share pandemic-related concerns without reservation and also provided a way to be connected to the world outside of their home during the early COVID-19 crisis. Thus, they acknowledged that the emotional support enhanced their feelings of connection with others as well as helped them relieve stress and depressive symptoms. In particularly, continuous support and acknowledgment by the RAs proved to validate the caregivers’ experiences and challenges related to caring for PWDs during this difficult time. The four quotes from diverse caregivers listed below are examples reflecting participants’ experiences with the telephone support intervention:

This telephone call is a very positive experience and I see the benefits from it. I really enjoyed the conversations especially during times when I was stressed out… I like that the calls were done weekly. It gave me something to look forward to. I felt I was really able to share my concerns and feelings which helped me not bottle in the emotions.

(English speaking caregiver, wife, age 71)

I felt good because it [weekly telephone support call] was a distraction from being bored all day and it was nice remembering you from when you came to my house. I really enjoyed the motivation you gave me to appreciate what I have even in this situation that is going on… The emotional support was most helpful. It reminds me that I am not the only one experiencing the isolation of quarantine.

(Spanish speaking caregiver, daughter, age 60)

The phone call was very helpful for me. I was happy to be able to speak to someone who understands me. It was good that someone listened to me. I was encouraged through this call. The most helpful thing (from the program) was to relieve my emotional stress.

(Korean speaking caregiver, daughter, age 59)

Although I probably could have gone through this tough time without the telephone support, it was nice for me to have someone to talk to throughout the journey… The most helpful part for me was getting help on food issues [assistance with calling a non-profit organization to get Asian foods] for my wife… she had chewing problems. During this time, it is very easy to get lonely, so I really appreciate even though I sometimes feel bad for asking for help all the time… I hope we can still stay in contact in the future.

(Vietnamese-speaking caregiver, husband, age 76)

Relieved emotional stress.

To Response to weekly telephone-based compassionate listening and mindful breathing, despite caregivers experienced frustrations, anxiety, or depressed symptoms during the early COVID-19 pandemic and ‘Stay-at-Home’ order period, they reported that they became more positive over times and relieved their emotional distress while they received our weekly phone calls. Through the compassionate listening from the bilingual RAs who spoke the same language and the mindful breathing, caregivers were able to share their negative emotions such as frustration, anxiety, and depressed symptoms, which led relief from emotional stress. A Caregiver expressed after having conversation with our RAs they felt energetic and motivated to provide good care for their PWDs (Vietnamese-speaking husband, aged 76). Most caregivers appreciated that they were able to manage their stress well while participating in the study.

My mood has been much calmer, gotten better at dealing with it. Throughout the week I have been doing well. I am at home most of the time, so I tries to use this time talking with you to relax.

(Spanish-speaking wife, aged 76)

I think that mindfulness breathing is effective in reducing my anxiety when I remember to do it. It was a great reminder each week for me to do deep breathing to reduce stress levels.

(English-speaking wife, aged 65)

Reliable and helpful information to adapt to the pandemic.

Caregivers reported that they watched television news about the COVID-19 at earlier pandemic time to grab the understanding about the COVID-19 pandemic however, many caregivers reported that they tried not to watch the news as much because it stresses the severity of the pandemic which made caregivers scared more. One of the caregivers mentioned that she felt like the media twist around the COVID-19 information a lot which made the pandemic circumstances seemed worse than as it was (Vietnamese-speaking daughter, aged 50).

Through the telephone COVID-19 safety education based on CDC up-to-date recommendations, caregivers appreciated that the validated and relevant COVID-19 safety precaution information. This relieved caregivers overwhelmed sense caused by negative and confusing information from diverse media as well as guided them to take COVID-19 precautions such as social distancing, wearing masks, and washing hands often for both themselves and PWDs (Korean-speaking caregiver, wife, aged 72). After weeks of quarantine, these adjustments to the COVID-19 pandemic were no longer new to caregivers and easier to follow (Spanish-speaking caregiver, wife, aged 56) when the vaccines were not available. With the telephone support intervention, most caregivers said they were able to adapt to the COVID-19 situation eventually being able to improve their caregiving and feeling in a much better mood.

I really enjoyed knowing what is real and what was myth about the virus. This made me feel better regarding how to take the correct precautions for myself.

(English-speaking caregiver, wife, aged 71)

Reinforced caregiving skills.

Caregivers mentioned how they were adapting to pandemic situation by integrating caregiving information daily basis that they learned through the telephone support intervention, especially refreshing companionate communication skills and suggested daily activities with their PWDs. Some caregivers said they followed the advice from our RA regarding daily activities with PWD including gardening, walking in the backyard, and singing favorite songs at home for their wellbeing. The two quotes from various caregivers listed below are examples that reflect how the telephone intervention refreshed caregiving skills:

Through the phone calls, I learned a lot about how to communicate with my mom, again. It was very helpful for me. So, I try to do with joy and willingness.

(Korean speaking caregiver, daughter, age 59)

I feels like I am adjusting to not having the daycare service and is becoming accustomed to providing my husband (PWD) with around the clock care… I thought that it was a good idea to include him in daily chores, I am going to implement that more often. An activity that the PWD does is coloring.

(Spanish-speaking caregiver, wife, aged 76)

For feedback on the telephone support, participants noticed that mindful breathing was a practical stress reduction strategy during the COVID-19 pandemic. Most caregivers appreciated reliable COVID-19 safety guidelines that helped them adapted to the pandemic. Many caregivers expressed that reinforcement of the communication skill with PWDs that they learned from the parent study enhanced their capacity to take care of PWDs despite social isolation and the limited essential services (e.g., adult day service, in-home service).

Overall, the social connection and support from the RAs proved a helpful link to the outside world during the early months of the pandemic crisis. Some caregivers wished to be in touch with the research team continuously, getting updates on new studies and medications related to dementia and caregiving.

DISCUSSION

This telephone intervention was a follow-up to the prior parent home-visit based intervention to respond to the COVID-19 crisis. The telephone support provided an opportunity for the family caregivers of PWDs with various ethnic backgrounds to share their emotional and social challenges caused by the COVID-19 pandemic and the ‘Stay-at-Home’ order in California, U.S. In addition, we were able to demonstrate that telephone support provided by bilingual RAs is a helpful approach to promote social connection, reduce emotional distress, and adapt to the COVID-19 pandemic with trustworthy health information.

We used compassionate listening to assist caregivers to talk about their emotional experiences throughout the sessions of the intervention. This provided the unique opportunity to understand their challenges and needs on an in-depth level. We found that family caregivers reported living in immense fear of COVID-19 due to the highly contagious nature of the SARS CoV2 virus and the exacerbation of the disease and its symptoms. This finding is in line with other studies conducted during the early pandemic. In an article by Hwang et al. (2021), the influence of COVID-19 on the emotional wellbeing of African American family caregivers for PWDs was examined using a questionnaire via telephone. Over 71% of the participants experienced symptoms of anxiety of transmitting the virus to their PWDs and 53% expressed concerns over having PWDs follow the suggested public health protocols (Hwang et al., 2021). Furthermore, our findings also demonstrated that caregivers feared if they were to be infected, their PWDs would lose their primary family caregivers. Our study also highlighted the limitations caregivers experienced in receiving outside support, specifically with the difficulty or reluctance in contacting other family members or friends. Subsequently, these family caregivers were prone to experiencing emotional distress, excessive pressure, and isolation threatening their health (Greenberg et al., 2020). These findings emphasize the success of our telephone emotional support program in alleviating some of the increased burden of dementia caregiving resulting from the pandemic.

Many communities followed established public health protocols to limit the virus’s transmission by issuing ‘Stay-At-Home’ orders mandating non-essential workers to remain at home (Brodeur et al., 2021; Hsiang et al., 2020). Consequently, many caregivers lost access to previous support resources such as adult day care services and in-home-support, leaving them to provide 24/7 care to their PWD. As such, caregivers experienced greater caregiving burden and stress. In addition to many other studies, our family caregiver participants reported increased stress, depressive symptoms, and accumulated care burden due to the curtailing of respite services and support networks. Finding ways to relieve this stress by socializing with friends and attending caregiver support groups were now restricted. A study by Borges-Machado et al. (2020) discussed how the ‘Stay-At-Home’ order and specifically the subsequent home confinement negatively impacted both PWD and caregivers. Borges-Machado et al. (2020) found that there was a noticeable decrease in PWD cognition due to restrictions on sociability and a newly sedentary lifestyle during the early pandemic. In addition, they found that caregivers reported higher levels of perceived burden during this crisis period (Borges-Machado et al., 2020).

During the telephone intervention, RAs provided support tailored to caregivers’ challenges and needs, including validating their feelings, practicing mindful breathing, providing the COVID-19 safety guidelines, and reinforcing caregiving skills to deal with PWDs difficult behaviors. When caregivers described their experiences with this intervention, many participants shared that one of the most useful components was emotional support provided by RAs during the calls. Continuous acknowledgment of their emotional challenges by the RAs was helpful to alleviate their stress and depressive symptoms as well as connect to the outside world through the intervention. Caregivers were excited to receive the calls and looked forward to speaking with the RAs who spoke their language each week. They felt comfortable communicating their needs and experiences when speaking with the RAs who could understand the caregivers’ cultural perspective and respond in the caregivers’ preferred language, either Spanish, Korean, Vietnamese, or English.

There are some differences in caregiving experience during the early pandemic crisis and feedback for the telephone support study among diverse caregivers with different ethnicity background in our study. Most English-speaking participants (mostly non-Hispanic U.S. born Caucasian) expressed they were able to build social connection virtually (e.g., Zoom) with their other family members and/or significant others, while ethnic minority caregivers (i.e., Latinx, Korean and Vietnamese) reported that they were unaware of such virtual technology and had limited or no internet services their homes and thus they felt isolated not being able to meet other families or friends during this ‘Stay-at-Home’ order period. Some English caregivers showed that they easily learned about virtual technology as well as found necessary information through the Internet (e.g., ordering foods and/or masks during this pandemic period) and having virtual meets with their close friends and family. These activities have given them comfort because their social relationship was still maintained. On the other hand, Vietnamese caregivers in this study used phone calls to conduct to others, or endured stay at home period alone in isolation. Korean caregivers in our study said they used social media such as Kakao Talk (similar to phone call through smartphones) to connect to others family members or friends. Some offspring Korean caregivers shared they watched YouTube to follow pandemic situation and searched information using Korean language in Korean web browsers (e.g., Naver, Daum) to learn more about behaviors of PWDs. Unlike English, Vietnamese, and Korean caregivers, most Spanish-speaking caregivers in our study reported they received help from family members living together, such as their children or siblings (sharing direct care for the PWD or buying groceries).

Evidence shows that telephone-based programs are effective alternatives to in-person support programs (Cothran et al., 2021; Greenberg et al., 2020; Hwang et al., 2021; Kasar & Karaman, 2021; Mok et al., 2020; Sitges-Macia et al., 2021). More so, in the early pandemic, many caregivers were unfamiliar with web-based interfaces such as Zoom or Google Meet, which would have allowed for camera accessibility. The telephone is a generally universal resource that most of our caregivers did not have trouble using. Although caregivers expect more face-to-face than virtual programs, the findings of our study suggest that, when face-to-face programs are limited, the telephone support program can be a widely available and helpful methods of supporting caregivers for persons with dementia. Our findings are consistent with other remote interventions with caregivers of PWDs during the COVID-19 pandemic (Cooper et al., 2021; Goodman-Casanov et al., 2020; Keller et al., 2022; Lai et al., 2020; Perales-Puchalt et al., 2022; Quail et al., 2021). Keller et al. (2020) highlighted those virtual programs using Zoom has potential to support the health of African American women caregivers the in the USA. Perales-Puchalt et al. (2022) demonstrated that text-based intervention was effective ways decreased in behavioral symptom distress and depression of Latino caregivers of PWDs in the USA. Cooper er al. (2021) showed that the video-call intervention was helpful to improve social connectedness in the UK. Lai et al. (2020) reported that the video-conference program increased quality of life and self-efficacy as well as decreased caregiving burden among both caregivers of PWDs and PWDs in Hong-Kong.

Limitations

Most caregivers reported that information given via phone calls by our trained RAs under the supervision of nursing faculty was useful, and the sense of isolation, frustration, and fear was decreased. Still, we acknowledge the limitations of this study. First, only a qualitative method was used to evaluate the telephone intervention, because the priority of this current study was to provide immediate support, rather than add additional survey tasks for the caregivers who were already overwhelmed during the early pandemic crisis. Second, telephone intervention sessions and exit interviews were not audio-recorded because some participants objected to taping of the intervention sessions. The focus of this current study was to provide a safe and comfortable environment for participants to share their emotional experiences during the difficult pandemic. Third, the sample size is small, but nonetheless demonstrated benefit to caregivers of different cultural backgrounds. Our small sample of caregivers only included non-Hispanic white, Latinx, Vietnamese, and Korean which can limit generalization to other ethnic/racial caregivers. Last, telephone support intervention is not generalized to caregivers who have difficulties in using the telephone (e.g., hearing or vision challenges).

Implications for Future Research and Practice

We used a telephone intervention delivered by bilingual RAs to connect with diverse caregivers of PWDs immediately during the pandemic period. Our study suggests that culturally and linguistically appropriate telephone support interventions will be essential to alleviate emotional distress for vulnerable ethnic minority family caregivers of PWD during the context of disasters (e.g., pandemic, earthquake, wildfire, etc.). Although our results indicate that the positive impact of our telephone intervention using a qualitative approach, a future study with a mixed methods design is needed. Qualitative and quantitative data should be included to comprehensively evaluate the effectiveness of the intervention on health outcomes as well as understand caregivers’ experiences. Furthermore, dementia family caregivers need continuous support for maintaining their health and wellbeing for the duration of what might be a long caregiving journey. Thus, sustainability of interventions for dementia family caregivers should be a major focus, as the need for caregiver support will only grow as the population ages.

Conclusion

This study demonstrated that a telephone-based support program during the early COVID-19 pandemic benefitted caregivers of PWD who had a prior experience with a home-visit caregiver intervention. The phone intervention helped by reducing feelings of isolation and fear, providing emotional support, and providing necessary safety and caregiving information during the early critical months of the pandemic. The findings also showed that a telephonic support program met the needs of the dementia caregivers by providing a way to be connected to the world outside of their home during the early ‘Stay-at-Home’ period.