Asian Americans and Pacific Islanders’ perspectives on participating in the CARE recruitment research registry for Alzheimer's disease and related dementias, aging, and caregiving research

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This article describes the public health impact of Alzheimer's disease (AD), including incidence and prevalence, mortality and morbidity, use and costs of care, and the overall impact on family caregivers, the dementia workforce and society. The Special Report discusses consumers' and primary care physicians' perspectives on awareness, diagnosis and treatment of mild cognitive impairment (MCI), including MCI due to Alzheimer's disease. An estimated 6.5 million Americans age 65 and older are living with Alzheimer's dementia today. This number could grow to 13.8 million by 2060 barring the development of medical breakthroughs to prevent, slow or cure AD. Official death certificates recorded 121,499 deaths from AD in 2019, the latest year for which data are available. Alzheimer's disease was officially listed as the sixth-leading cause of death in the United States in 2019 and the seventh-leading cause of death in 2020 and 2021, when COVID-19 entered the ranks of the top ten causes of death. Alzheimer's remains the fifth-leading cause of death among Americans age 65 and older. Between 2000 and 2019, deaths from stroke, heart disease and HIV decreased, whereas reported deaths from AD increased more than 145%. More than 11 million family members and other unpaid caregivers provided an estimated 16 billion hours of care to people with Alzheimer's or other dementias in 2021. These figures reflect a decline in the number of caregivers compared with a decade earlier, as well as an increase in the amount of care provided by each remaining caregiver. Unpaid dementia caregiving was valued at $271.6 billion in 2021. Its costs, however, extend to family caregivers' increased risk for emotional distress and negative mental and physical health outcomes -costs that have been aggravated by COVID-19. Members of the dementia care workforce have also been affected by COVID-19. As essential care workers, some have opted to change jobs to protect their own health and the health of their families. However, this occurs at a time when more members of the dementia care workforce are needed. Average per-person Medicare payments for services to beneficiaries age 65 and older with AD or other dementias are almost three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 22 times as great. Total payments in 2022 for health care, long-term care and hospice services for people age 65 and older with dementia are estimated to be $321 billion. A recent survey commissioned by the Alzheimer's Association revealed several barriers to consumers' understanding of MCI. The survey showed low awareness of MCI among Americans, a reluctance among Americans to see their doctor after noticing MCI symptoms, and persistent challenges for primary care physicians in diagnosing MCI. Survey results indicate the need to improve MCI 700

Section: Race/ethnicity and Dementia Caregivingmentioning

confidence: 99%

Section: Caregivingmentioning

confidence: 99%

2022 Alzheimer's disease facts and figures

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“…A strong community partnership was deemed essential; numerous advisors representing community organizations, caregivers, and other older community members were involved in designing features. In addition, CARE's community partners helped recruit 123 focus group participants from seven AAPI cultural groups to provide community perspectives regarding appropriate messaging, outreach, and recruitment methods to facilitate AAPI participation in CARE 29 . A strategic decision was made to promote CARE as focused on health research more broadly, including ADRD research.…”

Section: Methodsmentioning

confidence: 99%

“…In addition, CARE’s community partners helped recruit 123 focus group participants from seven AAPI cultural groups to provide community perspectives regarding appropriate messaging, outreach, and recruitment methods to facilitate AAPI participation in CARE. 29 A strategic decision was made to promote CARE as focused on health research more broadly, including ADRD research. To facilitate CARE’s enrollment goal of 10,000 older AAPIs, a primary modality of enrollment online was selected ( Figure 1 ).…”

Section: Methodsmentioning

confidence: 99%

The Collaborative Approach for Asian Americans and Pacific Islanders Research and Education (CARE): A recruitment registry for Alzheimer's disease and related dementias, aging, and caregiver‐related research

Park

Meyer

Tsoh

et al. 2022

Self Cite

Introduction Clinical research focused on aging, Alzheimer's disease and related dementias (ADRD), and caregiving often does not recruit Asian Americans and Pacific Islanders (AAPIs). Methods With funding from the National Institute on Aging, we designed and launched the Collaborative Approach for AAPIs Research and Education (CARE), a research recruitment registry to increase AAPIs’ participation in ADRD, aging, and caregiving research. We present the design of this novel recruitment program. Results CARE uses community‐based participatory research methods that are culturally and linguistically appropriate. Since CARE's launch, it has enrolled >7000 AAPIs in a 1‐year period. The majority enrolled in CARE via community organizations and reported never having participated in any kind of research before. CARE also engages researchers by establishing a recruitment referral request protocol. Discussion CARE provides a promising venue to foster meaningful inclusion of AAPIs who are under‐represented in aging and dementia‐related research.

“…21 Three broad themes emerged from the focus groups: (1) culturally/linguistically appropriate outreach in culturally specific spaces; (2) motivations for research participation; and (3) approaches to outreach and recruitment methods. 21 In addition, the focus groups reported that recruitment and messaging strategies should be tailored uniquely for each targeted AAPI group, with a thorough understanding of the cultural/linguistic factors that facilitate research participation. Based on focus group findings, a set of recruitment strategy attributes, and levels within each attribute, was selected for the DCE survey.…”

Section: Care Dce Survey Developmentmentioning

confidence: 99%

Asian Americans’ and Pacific Islanders’ preferences in recruitment strategies and messaging for participation in the CARE registry: A discrete choice experiment

Park

Grill

Tsoh

et al. 2023

Self Cite

INTRODUCTIONThis discrete choice experiment (DCE) identified Asian American and Pacific Islander (AAPI) adults’ preferences for recruitment strategies/messaging to enroll in the Collaborative Approach for AAPI Research and Education (CARE) registry for dementia‐related research.METHODSDCE recruitment strategy/messaging options were developed in English, Chinese, Korean, and Vietnamese. AAPI participants 50 years and older selected (1) who, (2) what, and (3) how they would prefer hearing about CARE. Analyses utilized conditional logistic regression.RESULTSParticipants self‐identified as Asian Indian, Chinese, Filipino, Japanese, Korean, Samoan, or Vietnamese (N = 356). Overall, they preferred learning about CARE from the healthcare community (vs. community champions and faith‐based organizations), joining CARE to advance research (vs. personal experiences), and hearing about CARE through social media/instant messaging (vs. flyer or workshop/seminar). Preferences varied by age, ethnic identity, and survey completion language.DISCUSSIONDCE findings may inform tailoring recruitment strategies/messaging to engage diverse AAPI in an aging‐focused research registry.