Quality of Life and Needs of Deaf Informal Caregivers of Loved Ones with Alzheimer’s and Related Dementia

Abstract

No studies have included the experiences and needs of informal caregivers who are deaf, use American Sign Language (ASL), and care for a loved one with Alzheimer’s disease or related dementias (ADRD). The CDC’s BRFSS Caregiver Module and PROMIS-Deaf Profile measures were administered via an online bilingual English/ASL platform between October 2019 and March 2020. Out of 194 deaf adult signers who completed an online survey, 42 respondents (mean age = 66; SD = 12; 74% White) endorsed informally caring for someone with a medical condition. In this survey subsample of informal caregivers, more years of education was significantly associated with higher generic quality of life and higher deaf-specific quality of life. A smaller subset of informal deaf informal caregivers who were currently taking care of loved ones with ADRD were then invited to participate in a semi-structured interview. Among the 22 informal caregivers who were interviewed, there was a strong agreement among the participants who felt that their quality of life as informal caregivers was worse than hearing informal caregivers who took care of loved ones with ADRD. Findings highlight the importance of a call to action to address the needs of deaf informal ADRD caregivers.

Health outcomes in Deaf signing populations: A systematic review

“…A secondary data study found that Deaf people who reported low educational levels were more likely to be at risk for cardiovascular disease compared with Deaf people with a four-year college degree or more (OR = 5.76) [ 36 ]. Two small-scale self-report studies [ 37 , 38 ] found that more years of education was significantly associated with higher quality of life for Deaf people.…”

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

“…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.…”

“…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:…”

“…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.…”