Tech-Based Caregiver Support for Alzheimer's Disease (TACAD Trial)
Palo Alto (17 mi)Overseen byEun-Ok Im, PhD, MPH
Age: 18+
Sex: Female
Travel: May be covered
Time Reimbursement: Varies
Trial Phase: N/A
Recruiting
Sponsor: University of Texas at Austin
No Placebo Group
Trial Summary
What is the purpose of this trial?The purpose of the proposed study is to preliminarily evaluate Technology-based information and coaching/support program that is tailored for Asian American midlife women who are family caregivers of patients living with Alzheimer's disease (TACAD) in improving health outcomes of Asian American midlife women who are family caregivers of persons living with Alzheimer's disease (AACA) and their care recipients.
What data supports the idea that Tech-Based Caregiver Support for Alzheimer's Disease is an effective treatment?The available research shows that tech-based caregiver support can be effective for Alzheimer's caregivers, especially in Asian American communities. For example, a study with Vietnamese American caregivers found that after participating in a tech-based intervention, caregivers had better knowledge about Alzheimer's and felt more confident in seeking support services. This improvement was still present three months later. Although recruitment was challenging, those who participated found the program helpful and engaging. This suggests that tech-based support can be a valuable tool for caregivers, helping them manage the stress and challenges of caring for someone with Alzheimer's.128911
What safety data exists for tech-based caregiver support for Alzheimer's?The provided research does not directly address safety data for tech-based caregiver support for Alzheimer's. However, it highlights the feasibility and acceptability of caregiver interventions in minority communities, such as Vietnamese and Latino caregivers, and discusses the challenges they face. These studies emphasize the importance of culturally-responsive education and support programs, which may indirectly inform the safety and effectiveness of tech-based interventions by addressing caregiver burden and improving knowledge and self-efficacy.378910
Do I have to stop taking my current medications to join the trial?The trial protocol does not specify whether you need to stop taking your current medications.
Eligibility Criteria
This trial is for Asian American women, aged 40-65, who are Chinese or Korean and care for family members with early to middle-stage Alzheimer's. They must read/write English, Mandarin, or Korean, live in the U.S., have internet access, and provide at least 4 hours of daily unpaid care without plans for institutionalizing the patient within six months.Treatment Details
The study tests a program called TACAD against using the Alzheimer's Association website. It aims to see if TACAD can better improve health outcomes for these caregivers and their patients living with Alzheimer's disease by providing tailored information and coaching/support.
2Treatment groups
Experimental Treatment
Active Control
Group I: Intervention GroupExperimental Treatment2 Interventions
Patient will use TACAD and the Alzheimer's Association Website
Group II: Active Control GroupActive Control1 Intervention
Patient will use only the Alzheimer's Association Website
Find a clinic near you
Research locations nearbySelect from list below to view details:
University of Texas at AustinAustin, TX
The University of Texas at AustinAustin, TX
Emory UniversityAtlanta, GA
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Who is running the clinical trial?
University of Texas at AustinLead Sponsor
Emory UniversityLead Sponsor
References
Caring for family members with Alzheimer's disease: perspectives from Chinese American caregivers. [2022]The purpose of this study was to examine the experiences of Chinese American caregivers who provide care for family members with Alzheimer's disease (AD). Individual interviews were conducted with four family caregivers. Results revealed ethnocultural and structural barriers that Chinese family caregivers experienced, including stigmatization of AD in the Chinese community, a lack of knowledge about AD, a lack of culturally and linguistically appropriate AD services, nega tive interactions with health-care providers, and difficulty with English. This study vides cultural knowledge and insights nurses who care for AD clients and their fam ilies. Overcoming barriers and working with Chinese American families and their community are needed to improve access and dementia services for Chinese American patients and their families.
Development and iterative refinement of an internet-based service for Chinese family caregivers of people with Alzheimer Disease. [2018]This poster reports on the developmental phase of a new internet-based support services (ICSS) for Chinese caregivers of people with Alzheimer Disease (AD): a specialized email application and an informational website. Bilingual Chinese caregivers wanted internet-based information in both Chinese and English. Usability testing and heuristic evaluation results revealed that the interface successfully supported the core functionality, but can be refined to improve usability.
Learning from recruitment challenges: barriers to diagnosis, treatment, and research participation for Latinos with symptoms of Alzheimer's disease. [2022]This article discusses barriers to diagnosis and treatment of Alzheimer's disease (AD) and concomitantly to participation in AD research as elicited from 29 potential Latino participants who ultimately did not enroll in a study evaluating a caregiver intervention. Nearly half of all individuals contacting the researcher about the intervention study failed to meet criteria stipulating an existing AD diagnosis. Barriers to obtaining a diagnosis include lack of knowledge about AD, perceptions of memory loss as normal aging, and structural barriers to accessing care. A quarter of caregivers contacting the researcher felt too overwhelmed to participate. Many of these barriers have been previously identified as challenges to treatment, suggesting this is not just a methodological research problem, but inextricably tied to larger issues of AD knowledge and service accessibility. Engaging Latino communities equitably in the assessment of needs and the process of addressing them, thus ensuring the validity and applicability of the research and findings, is important both for increasing this group's participation in relevant studies and for addressing existing health disparities.
Caregiving for Hispanic Alzheimer's disease patients: understanding the problem. [2019]The authors analyze aspects of caregiving for Hispanic Alzheimer's disease (AD) patients. A review of the literature on caregiving and ethnicity and data concerning caregiving for AD patients in different Hispanic groups are presented. The presence of ethnicity-related differences in caregiving for Hispanic AD patients is confirmed. These differences, however, appear to be present largely in certain areas, such as household composition, distribution of caregiving roles, help-seeking behavior, and site of caregiving. The authors consider areas that need to be addressed in future research and specific modifications to current caregiving models for the study of AD patients in the Hispanic community.
Smartphone-Based Health Technologies for Dementia Care: Opportunities, Challenges, and Current Practices. [2020]Most of the 5.4 million people affected by Alzheimer's disease and other forms of dementia (AD) are noninstitutionalized, receiving care by unpaid family caregivers and medically managed by a primary care provider (PCP). Health Information Technology has been recognized for its potential in improving efficiency and quality of AD care and support for AD caregivers. Simultaneously, smartphone technologies have become an increasingly common way to deliver physical and behavioral health care. However, little is known about how smartphone technologies have been used to support AD caregiving and care. This article highlights the current need for smartphone-based interventions for AD and systematically identified and appraised current smartphone apps targeting and available for AD caregivers. Findings indicate that individual available apps have limited functions (compared with the complex needs of caregivers) and little has been done to extend AD caregiving apps to Hispanic populations. Implications for research, practice, and policy are discussed.
Information, communication, and online tool needs of Hispanic family caregivers of individuals with Alzheimer's disease and related dementias. [2022]To identify the information and communication needs of Hispanic family caregivers for individuals with Alzheimer's Disease and Related Dementias (ADRD) and the manner in which online tools may meet those needs.
Sources of Caregiving Burden in Middle-Aged and Older Latino Caregivers. [2021]We aimed to identify sources of caregiver burden in middle-aged and older Latino caregivers of people with Alzheimer disease and related dementia (ADRD).
"I was Confused About How to Take Care of Mom Because this Disease is Different Everyday": Vietnamese American Caregivers' Understanding of Alzheimer's Disease. [2022]Family members provide the majority of caregiving to individuals living with Alzheimer's disease (AD) and related dementias. Asian American families are disproportionately impacted by the burden of caregiving due to limited knowledge about the disease in this community. This study explored how Vietnamese American caregivers understand AD and provide care to family members with AD. Twenty caregivers who have provided care to a family member with AD participated in a semi-structured qualitative interview. Data were analyzed using thematic analysis. Several themes were identified in the caregivers' understanding of AD: (a) "Now I know:" the disruptions, shocks and surprises leading up to the initial diagnosis; (b) The frustrations of managing family members' cognitive impairments; (c)"Going with the flow:" challenges in managing personality and behavioral changes; (d) The exhaustion of around-the-clock caregiving; (e)"Taking it day by day" in the face of progressively worsening symptoms. Underlining the participants' descriptions of AD was a shared understanding of the progressively worsening, complex and unpredictable nature of the disease that makes it challenging for family caregivers on a daily basis. Findings provide important implications for healthcare workers' outreach to Vietnamese American families to ease the caregiving experience through culturally-responsive education, thereby enhancing the families' ability to recognize the early symptoms and seek appropriate help.
Community-Engaged Research with Vietnamese Americans to Pilot-Test a Dementia Caregiver Intervention. [2022]Caring for a family member with Alzheimer's disease (AD) or a related dementia is stressful, and this may especially be the case for racial/ethnic minority caregivers. This study examined the feasibility and acceptability of a pilot intervention for Vietnamese American dementia caregivers. A secondary, exploratory aim was to examine post-intervention effects on AD knowledge and psychosocial outcomes. Of the 87 individuals contacted, 32 met inclusion criteria. Of this number, 14 enrolled in the study with 11 caregivers completing the intervention, and 10 of the 11 completing 3-month follow-up data. Caregivers provided positive feedback on the intervention and had higher scores on AD knowledge and self-efficacy in seeking support services post-intervention, with the effect on self-efficacy maintained at 3-month follow-up. Recruitment for the intervention was difficult; however, once caregivers came to the first session, they were engaged and found the classes informative. Recommendations for a future intervention are discussed.
Resources for Enhancing Alzheimer's Caregiver Health in Vietnam (REACH VN): study protocol for a cluster randomized controlled trial to test the efficacy of a family dementia caregiver intervention in Vietnam. [2023]Alzheimer's disease and related dementias (AD/ADRD) are a public health challenge for Vietnam because of its rapidly aging population. However, very few community-based programs exist to support people living with AD/ADRD and their family caregivers. Resources for Enhancing Alzheimer's Caregiver Health in Vietnam (REACH VN) is a culturally adapted family caregiver intervention shown in a pilot study to be feasible and promising in terms of preliminary efficacy. We describe the protocol for a larger cluster randomized controlled trial (RCT) to test the efficacy of REACH VN among family caregivers of people living with dementia in a semi-rural area outside of Hanoi, Vietnam.
'It's a lonely journey': caregiving experiences and psychosocial distress among Chinese American dementia family caregivers. [2023]Chinese American family caregivers of persons with Alzheimer's disease and related dementia (ADRD) are a vulnerable but understudied population. The goal of this qualitative study was to examine their caregiving experiences and psychosocial distress process and explore intervention strategies.