Alzheimer’s Disease and Relate Dementia Reform Health Care

Executive Summary

The "model minority" stereotype and the lack of disaggregated data foster inaccurate representation of the Asian Americans and Pacific Islander (AAPI) community. This causes older adults with Alzheimer's disease and related dementias in particular to experience language and cultural discriminatory barriers, impacting their access to appropriate healthcare services. Advocating for linguistically and culturally appropriate healthcare services will aid in meeting the health needs of older AAPI adults through the implementation of in-language resources by healthcare providers and educating mainstream aging providers on cultural differences within AAPI subpopulations.

Conversely, some argue that in-language services, such as professional interpreters, create additional communication barriers and culturally competent services prompt providers to make inappropriate patient assumptions, potentially leading to adverse outcomes. Consequently, along with supplying older AAPI patients with quality care, a language and cultural policy should also address potential contradictions and reduce latent negative effects.

Background

The aging population in the United States is steadily growing. For the first time in history, the population of citizens aged sixty-five years or older is anticipated to overtake the demographic of persons ten years old or younger (AARP, 2015). Almost 10% of the total U.S. population is constituted of AAPI citizens, amounting to 4.64 percent of the national aging populace (Ong, 2016). Expected longevity is changing parallel to the increasing AAPI population, which speeds up demographic shifts projected to increase the AAPI older adult population by 145% between 2010 and 2030 (U.S. Census Bureau, 2010).

However, despite the escalating population of AAPI older adults, the "model minority" stereotype and aggregated data under the homogenous Asian category have created a scarcity of language and cultural services. As a case in point, funding from the Older Americans Act (OAA) served over 2.7 million older adults in 2013, but just over 3 percent of AAPIs, and only 3 percent of provided caregivers were AAPI compared to 53 percent being Caucasian (Administration for Community Living, 2013).

The scarcity of language and cultural services compromises AAPI's ability to gain equal access to healthcare resources providing early information, diagnosis, assistance, and understanding for both AAPI patients and their families coping with Alzheimer's disease and related dementias. Although the total U.S. population increased by 18 percent, Asian Americans experienced a 74 percent increase and Native Hawaiians and other Pacific Islanders, a 52-percent increase. This led to a widening AAPI demographic and its associated seniors experiencing negative generational effects if healthcare providers fail to enhance linguistic and cultural policy. This, in turn, will decisively impact the future of AAPI healthcare (Ong, 2016).

The rising problem of absent AAPI language and cultural services is under extensive research from the National Asian Pacific Center on Aging (NAPCA). Working in conjunction with the White House Initiative on Asian American Pacific Islanders (WHIAAPI), NAPCA is probing into and emphasizing the varied needs of the aging AAPI population in an effort to promote accessible public services and address the extended prevalence of healthcare issues.
Discriminary barriers related to language and culture impact all low-income communities and communities of color. These barriers make it difficult for patients and families dealing with Alzheimer's disease and related dementias to receive the proper health care accommodations and resources. The inability to effectively communicate with health care providers imposes further challenges for both physicians and patients to access proper services, recommendations, and caregiving. The older Americans Act and Affordable Care Act propound provisions for AAPI older adults, however, they are not implemented in a way that best serves the AAPI community in terms of health insurance, funding, or language and cultural applicable resources.

Already, the development of the 1998 Minority AIDS Initiative and current legislation to expand health services for diabetes, cancer, and Alzheimer's diseases patients have expanded access to health care services. This experience will serve as a tremendous asset in advocating for the improvement of linguistic and cultural policies and will further contribute to existing efforts. In Congressional District 43, CA, with a population of 745,656, race and ethnic census data report Asians to be 13 percent of the population. This is double the 6 percent rate of the entire United States population, though slightly less than the 14 percent rate in California (Census Report, 2017). Furthermore, under the category of place of birth, out of 31.3 percent of residents recorded as part of the foreign-born population, 25 percent identify as Asian. This is about two-thirds of California's rate of 38 percent and about 80 percent of the 30 percent rate in the United States. This data, though flawed in neglecting to disaggregate the Asian category into subpopulations and adhering to OMB Directive 15's requirement of separating Asians into "Asian" and "Native Hawaiian or Other Pacific Islander," still highlights the significant number of Asians and foreign-born Asians who would benefit from linguistically and culturally appropriate health care services.

Evidence
A comprehensive search was conducted using the AAPI Nexus Journal database. This included quantitative testimony from other advocacy organizations such as the National Asian Pacific Center on Aging, AARP Executive Summary, Centers for Disease Control and Prevention, and National Standards for Culturally and Linguistically Appropriate Services in Health Care.

Problem
Despite recent pushes from NAPCA and WHIAAPI for greater language and cultural appropriateness in services for aging AAPIs with Alzheimer's disease and related dementias, many AAPIs still face the "model minority" stereotype and aggregated data collection. These hinder the initiation and implementation of improved funding, language assistance, and cultural competence among health care providers. Advocacy must persist in collecting disaggregated data on AAPI older adults with Alzheimer's disease and related dementias, that can be used to build a defense around long-term service and support systems for California, particularly Congressional District 43. This can help organize and understand the unique health services and resource trends among AAPI subpopulations. Many AAPI older adults experience stigma and misperceptions surrounding Alzheimer's disease and related dementias, causing many to either not seek or fully understand current resources and services. Increased funding, education, and holding health care providers accountable for supplying preferred language services and cultural competency can resolve these issues.

Policy Options
: Increase funding for in-language resources and cultural competency. Available funding for linguistically and culturally accessible information is imperative for AAPI older adults to achieve maximum health security and care. By increasing the funding for language and cultural services, healthcare providers can allocate more fiscal investments to supplying in-language interpreters proficient in the diverse language needs of each AAPI subpopulation. This policy option will result in a high monetary demand; however, negotiation with different healthcare providers and data researchers can allow for an equitable determinant that financially adheres to both currently established projects or requirements while allocating resources to support the linguistic and cultural finances. Funding from influential statewide organizations or higher-level individuals, like the Workforce Development Aging and Community Services or Kerio, will facilitate stronger healthcare equity amongst AAPI older adults and contribute to available services, aiding in the communicative understanding of Alzheimer's disease and related dementias. Fiscal support for in-language resources will include but is not limited to the hiring of a bilingual staff, interpreter services, and in-language programs, services, and resources for patients with limited English proficiency or language barriers.

Providing ongoing healthcare education and training on culturally and linguistically appropriate services: Instituting and facilitating the continuation of educating healthcare providers and staff on AAPI cultural differences will ensure the accessibility of educated professional translators and staffing across all levels and disciplines are knowledgeable in culturally and linguistically appropriate services. Most AAPIs value physical family unity and employ family or informal caregivers as translators, with 54 percent communicating with healthcare providers versus 36 percent of the total population (AARP, 2014). However, due to the complexity of medical information and diction, culturally and linguistically educated interpreters and aging providers are of crucial importance to ensure each patient understands and receives quality life care. Furthermore, due to the lack of public education, AAPI families often have misunderstandings surrounding Alzheimer's disease and related dementias. This is often due to the topic's inability to be properly translated, therefore, aging AAPI individuals are unable to receive and or understand the necessary resources available. A higher cost for implementation may manifest; however, this will benefit the long-term ramifications. Support from the National Council on Interpreting in Healthcare and demographic information and health-related facts from the U.S. Department of Health and Human Services, Office of Minority Health, should be harnessed to promote efforts of understanding communities and each unique culture.

Ensure healthcare providers supply preferred language services and demonstrate a diverse competence of cultural health practices: Developing regulating standards for language and cultural healthcare services will require all healthcare providers to follow a systematized format and report currently employed services. By recording and holding healthcare providers accountable for which languages are most commonly administered and analyzing the effects of how cultural competency resources and additional services impact overall understanding and security, we can improve the implementation of such systemic language and cultural services. Healthcare organizations and providers must supply patients with their preferred language, both verbally and through written notices, to ensure full understanding and correct translation of medical information. Concerns regarding cultural assumptions by healthcare providers can be eliminated by enforcing their responsibility to provide equitable and accessible healthcare resources and stress the importance of language and cultural diversity.
The Congressional District 43, CA, should increase funding for education and hold healthcare providers accountable for the diverse language and cultural needs of different AAPI older adults and families with Alzheimer's disease and related dementias. Additionally, it should significantly expand the collection of disaggregated data on AAPI subpopulations. Given the above policy options, which correspond with intersectionality, it would be of the utmost importance, in efforts to build a unified voice among AAPI older adults and other community members within Congressional District 43, CA, to begin corresponding with external AAPI organizations, such as NAPCA. They should also cooperate with community-based AAPI-serving organizations to implement linguistically and culturally appropriate healthcare services. The problem of the lack of linguistic and cultural services can be resolved through increased funding to improve current data on AAPI older adults. Disaggregated data will illustrate to policymakers the diverse subpopulation demand within the category of Asian for in-language and cultural competency resources. This will provide patients with professional translators and healthcare providers with knowledge regarding the varying medical strategies and beliefs within each serving AAPI subpopulation. The second policy option will resolve this problem by requiring all healthcare providers to enforce the continuation of education and training on AAPI cultural and linguistic differences. For example, with 42 percent of AAPIs caring for elders, versus 22 percent of the general population, many AAPI families, due to traditional cultures, value family closeness over healthcare providers, and are therefore resistant to submit their elders into institutional facilities (AARP, 2014). Thus, guaranteeing healthcare providers will supply the preferred language service and a diverse competence of cultural health practices will expedite policy implementation. While the new policy may appear timely, costly, and resource-demanding, the policy recommendation of implementing in-language services and cultural competence education, due to the growing size of the AAPI community, will serve the best interest of future generations. Investing in a language and cultural policy will unite the Congressional District 43, CA, community with the AAPI community, and together, they can pursue this policy recommendation.

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