“Left Behind and Ignored”: Increasing Awareness and Accessibility of Resources for Alzheimer’s Disease and Related Dementias in the Deaf Community

As detailed in a recent article by Ammons et al, ¹ the crisis aspects of caring for a deaf person with Alzheimer’s disease or related dementias (ADRD) are having detrimental effects on deaf people who are informal caregivers for loved ones with ADRD, including deaf and hearing family members, and who require medical care. In response to the findings from that study, which included survey data from the Caregiver Module of the Behavioral Risk Factor Surveillance System and qualitative interview data from informal family caregivers of people with ADRD, deaf community advocates, policy makers, researchers, and multiple major deaf organizations have been making attempts to rectify the needs of deaf patients with ADRD. However, we believe that past mandates from the Americans With Disabilities Act (ADA) to accommodate deaf people in health care have not resulted in the hoped-for remedies for deaf people with ADRD. Although well-intentioned, the ADA’s mandates have at times failed to meet the health care needs of deaf people with ADRD. The current crisis in the deaf community calls for evidence-based, comprehensive caregiver training. This training needs to be accessible to deaf caregivers from racially and ethnically diverse backgrounds and include direct sign language accommodations as well as captioning.

Culturally and linguistically accessible education materials in sign language or with captions on ADRD, informal caregiver training, mentors, experienced dementia care workers, and support groups are lacking. This lack of accessibility to information and the historical marginalization of deaf people who use sign language hamper the dissemination of evidence-based, professional, and public education, resulting in inadequate reimbursement for caregiving.

We propose a call to action for policy makers, health care systems, assisted living facilities, health insurers, gerontology providers, and health care educators to lead in effecting the changes needed to increase accessibility of ADRD-based training and educational materials to the deaf community. Here, we offer recommendations for health care professionals, organizations, and researchers whose goals are to support and achieve health equity for deaf caregivers and deaf people with ADRD (Box). Of note, a key resource in support of these recommendations is the Building Our Largest Dementia Infrastructure for Alzheimer’s Act, which was passed in December 2018. ² This Act authorizes the Centers for Disease Control and Prevention to spend $20 million per year for 5 years ³ to establish centers of excellence across the country dedicated to promoting effective ways to address Alzheimer’s disease and to helping caregivers better understand and address dementias. These centers will also help educate the public on Alzheimer’s disease, cognitive decline, and overall brain health.

Box.

Goals of a call to action to achieve health equity for deaf caregivers and deaf people with Alzheimer’s disease and related dementia in the United States ^a

• Increase awareness of Alzheimer’s disease and related dementias (ADRD) in the deaf and hard of hearing community that is ethnically and racially diverse. • Deliver evidence-based training in sign language for dementia care workers and informal caregivers who are deaf and use sign language. • Train health care practitioners and facility administrators in the evidence base of effective patient-centered care and accommodation practices to include deaf informal caregivers and family members in the care of loved ones with ADRD, including those from racial and ethnic minority groups. • Facilitate improvements to care worker and respite care services for informal caregivers of deaf people with ADRD.• Advocate for policy initiatives that remedy system and reimbursement barriers to caregiving for deaf people with ADRD. • Promote ongoing research and dissemination of the role of paid care workers and informal family caregivers of deaf people with ADRD, focused on the short- and long-term supportive and economic impact of effective caregiving practices in the deaf community.

^aThe term “deaf” is used in an all-inclusive manner to include people who identify as deaf, deafblind, deaf-disabled, hard of hearing, late-deafened, and hearing impaired. This term is used to recognize the shared experiences of people from diverse deaf communities while also honoring their differences.

The centers of excellence, as well as medical and public health research communities, need to include racially and ethnically diverse deaf people who experience cognitive decline and the loved ones who care for them. This means engaging deaf people and their advocates as partners, making materials accessible in sign language, and including information about deaf people’s needs in the education of the public and health professionals who encounter deaf patients in their care. We have used the term “deaf” in an all-inclusive manner to include people who identify as deaf, deafblind, deaf-disabled, hard of hearing, late-deafened, and hearing impaired. We use this term to recognize the shared experiences of people from diverse deaf communities while also honoring their differences.

Recommendation 1: Increase Awareness of Alzheimer’s Disease and Related Dementias in the Deaf and Hard of Hearing Community That Is Ethnically and Racially Diverse

Providing ADRD resources in a sign language format will improve access to accurate ADRD-related information and improve awareness and health literacy among deaf people who use sign language.^1,4 Disseminating high-quality, culturally adapted, and linguistically aligned videos that are accessible can increase knowledge of ADRD care among deaf people.^5,6 We recommend the following actions for policy makers and advocates in the deaf community:

• Engage the media and foster public awareness of ADRD to include ethnically and racially diverse deaf people who use sign language.

• Recognize and support deaf organizations, Alzheimer’s disease societies, and health insurance carriers and their important roles in disseminating information and educating their members and the public on accessibility needs to support ADRD care of deaf people from diverse backgrounds.

• Promote information and education activities that highlight and facilitate the communication accessibility of deaf patient–practitioner conversations on comprehensive, accessible ADRD care options.

• Make state-level activities related to the education of early detection and diagnosis of ADRD (eg, Medicare annual wellness visit) accessible in sign language and inclusive of deaf people. These activities must involve collaborations with state commissions and/or organizations that cater to deaf residents from diverse backgrounds.

Recommendation 2: Deliver Evidence-Based Training in Sign Language for Dementia Care Workers and Informal Caregivers Who Are Deaf and Use Sign Language

As shown among culturally diverse groups who were speakers of non-English languages and informal caregivers to people with ADRD, participation in culturally adapted and linguistically appropriate dementia caregiver training programs increased their awareness and readiness of care.^7-9 In addition, the informal caregivers reported improved quality of life after participation.^7-9 Specifically, a qualitative study of informal deaf caregivers identified accessibility as a necessary component of dementia care worker training. ¹ These findings underscore the importance of providing high-quality, culturally adapted, and sign language–accessible training and educational materials to empower deaf caregivers. Providing the necessary knowledge and tools to deaf caregivers can improve the well-being of those in their care, as well as themselves. ⁶

We recommend accessible ADRD caregiver training resources that are culturally and linguistically appropriate. These resources will (1) increase the deaf person’s knowledge and skills to care for loved ones with ADRD, (2) decrease ADRD caregiving challenges among deaf informal caregivers from diverse backgrounds, (3) improve the overall well-being of deaf informal caregivers, and (4) create a workforce of paid care workers who can communicate fluently with deaf adults with ADRD and their informal caregivers who use sign language.

Recommendation 3: Train Health Care Practitioners and Facility Administrators in the Evidence Base of Effective Patient-Centered Care and Accommodation Practices to Include Deaf Informal Caregivers and Family Members in the Care of Loved Ones With Alzheimer’s Disease and Related Dementias, Including Those From Racial and Ethnic Minority Groups

Deaf patients and their families, because of communication and linguistic differences, have historically faced health disparities, including suboptimal physician–patient communication, lack of shared decision making, reduced satisfaction and trust with care, adverse events, and lack of access to care.^10-13 One study found that medical students who received deaf-specific training had significantly higher overall scores in cultural competency knowledge than both faculty and peers who did not receive training. ¹⁴ Findings of the effectiveness of cultural awareness training have been replicated in other studies.^15,16 One evaluation study found that disability-related medical education positively influenced patient care later in students’ medical careers. ¹⁷ Online deaf cultural sensitivity training can help improve care for deaf patients with ADRD. ¹⁸

We recommend the following actions that can improve patient-centered care and accommodation practices for deaf people with ADRD:

• Mandate inclusion of deaf patient education materials for all health professionals who provide care to deaf people with ADRD. Such a mandate will stimulate the implementation of medical education and training for health care professionals providing ADRD-related services.

• Train students and health care practitioners on providing effective, evidence-based, culturally sensitive care to deaf people who experience cognitive declines.

• Require deaf-specific training, in addition to cultural sensitivity training, in medical education and assisted living facilities to effectively inform and educate deaf patients and their caregivers on evidence-based, comprehensive models of ADRD care, including self-efficacy, patient responsibility, self-care, and lifestyle choices.

Recommendation 4: Facilitate Improvements to Care Worker and Respite Care Services for Informal Caregivers of Deaf People With Alzheimer’s Disease and Related Dementias

Additional paid care workers and respite services are needed to support the informal caregivers of people with ADRD. Although existing agencies on aging offer access to respite care, informal caregivers of deaf loved ones with ADRD often avoid using these services because of differences in linguistic ability and cultural differences. Solutions to increase use of these respite care services include (1) improving the service network for supporting informal caregivers and (2) providing cultural and linguistic training to paid care workers so that they are prepared to support deaf people with ADRD.

We recommend the following actions to improve respite care services for informal caregivers to deaf people with ADRD:

• Hire deaf consultants to provide workshops and training to staff on working with deaf inpatients and residents who have unique cultural and linguistic needs.

• Embed deaf and sign language–related training materials in care worker or caregiving training certification programs.

Recommendation 5: Advocate for Policy Initiatives That Remedy System and Reimbursement Barriers to Caregiving for Deaf People With Alzheimer’s Disease and Related Dementias

Without Medicaid or veteran status, it is difficult to get reimbursed for caregiving. Currently, Medicare covers only short-term caregiving. ¹⁹ About 53 million people in the United States provide care without pay, and few options are available to reimburse caregiving. One option is Veterans Directed Care, which is available in 37 states, the District of Columbia, and Puerto Rico; this program allows qualified former service members to manage their own long-term services and support. ²⁰ Another option is the Aid and Attendance program, which allows for supplementing a military pension to help cover the cost of a caregiver, whether it is a family member or a hired professional. ²⁰ One added layer of complexity is that many deaf and hard of hearing people receive Social Security Disability Insurance benefits and often do not qualify for Medicaid, yet they cannot afford private health insurance on their own.

To remove reimbursement barriers to caregiving for deaf people, states need to adopt coverage policies and plans to support communication accessibility for informal ADRD caregivers who are deaf, dementia care workers who are deaf, and deaf people with ADRD. Policies must require private health insurers to cover the communication accessibility needs of deaf caregivers who care for people with ADRD.

We recommend the following advocacy activities for policy makers and advocates in the deaf community to remedy reimbursement barriers and increase support for deaf caregivers and deaf people with ADRD:

• Develop guidelines on accessibility to ADRD information, ADRD support group services, and facilities for racially and ethnically diverse deaf people who use sign language.

• Increase deaf informal caregivers’ access to caregiving classes and support groups.

• Promote organizations and centers to make their ADRD resources accessible in sign language, with captioning as an essential part of caregiving and planning for deaf people with ADRD as well as deaf informal caregivers from diverse backgrounds.

• Make all federal or state-funded aging/senior services, materials, and training accessible by use of a centralized mechanism, such as a designated state department that is tasked with ensuring accessibility in information, training, facilities, and coordination of services.

• Collect disaggregated disability data, including language preference, to tailor long-term and support services.

• Advocate for federal and state policies and legislation that would ensure centralized mechanisms for reimbursing caregiving services for deaf people and/or caregivers. Federal and state reimbursement policies need to be based on current evidence of effectiveness, cost-effectiveness and risk mitigation, and need to require services (eg, sign language interpreting, live captioning) to accommodate deaf caregivers’ needs. These policies will allow caregivers who are deaf to effectively participate in health care and treatment plan decision-making efforts for their loved ones.

Recommendation 6: Promote Ongoing Research and Dissemination of the Role of Paid Care Workers and Informal Family Caregivers of Deaf People With Alzheimer’s Disease and Related Dementias, Focused on the Short- and Long-Term Supportive and Economic Impact of Effective Caregiving Practices in the Deaf Community

We recommend the following actions to increase research efforts on caregiving to deaf people with ADRD, including both paid care workers and informal caregivers:

• Identify and fund research to evaluate health outcomes and economic impact of accessible caregiving training and ADRD information to promote brain health, reduce the risk of cognitive decline, and improve the care of deaf people with Alzheimer’s disease.

• Identify and fund projects to create an ethnically and racially diverse workforce of community health workers or patient navigators who are fluent in sign language. The availability of ethnically and racially diverse sign language–fluent community health workers or patient navigators has strong potential to improve health outcomes among ADRD patients and their deaf caregivers from diverse groups.

• Ensure that the call for research includes studies on developing a comprehensive, accessible ADRD care model for both the patient and informal caregiver who are deaf and use sign language. The National Institutes of Health, the National Institute on Aging, the Agency for Healthcare Research and Quality, the Centers for Medicare & Medicaid Services, and other agencies and foundations should seek to fund investigations of comprehensive, accessible models to determine their impact on health outcomes among people who are deaf.