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

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 b...

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Autores principales: Ammons, Donalda, Engelman, Alina, Kushalnagar, Poorna
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8762484/
https://www.ncbi.nlm.nih.gov/pubmed/35047652
http://dx.doi.org/10.1177/2333721420966518
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author Ammons, Donalda
Engelman, Alina
Kushalnagar, Poorna
author_facet Ammons, Donalda
Engelman, Alina
Kushalnagar, Poorna
author_sort Ammons, Donalda
collection PubMed
description 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.
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spelling pubmed-87624842022-01-18 Quality of Life and Needs of Deaf Informal Caregivers of Loved Ones with Alzheimer’s and Related Dementia Ammons, Donalda Engelman, Alina Kushalnagar, Poorna Gerontol Geriatr Med Brief Report 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. SAGE Publications 2020-10-21 /pmc/articles/PMC8762484/ /pubmed/35047652 http://dx.doi.org/10.1177/2333721420966518 Text en © The Author(s) 2020 https://creativecommons.org/licenses/by-nc/4.0/This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Brief Report
Ammons, Donalda
Engelman, Alina
Kushalnagar, Poorna
Quality of Life and Needs of Deaf Informal Caregivers of Loved Ones with Alzheimer’s and Related Dementia
title Quality of Life and Needs of Deaf Informal Caregivers of Loved Ones with Alzheimer’s and Related Dementia
title_full Quality of Life and Needs of Deaf Informal Caregivers of Loved Ones with Alzheimer’s and Related Dementia
title_fullStr Quality of Life and Needs of Deaf Informal Caregivers of Loved Ones with Alzheimer’s and Related Dementia
title_full_unstemmed Quality of Life and Needs of Deaf Informal Caregivers of Loved Ones with Alzheimer’s and Related Dementia
title_short Quality of Life and Needs of Deaf Informal Caregivers of Loved Ones with Alzheimer’s and Related Dementia
title_sort quality of life and needs of deaf informal caregivers of loved ones with alzheimer’s and related dementia
topic Brief Report
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8762484/
https://www.ncbi.nlm.nih.gov/pubmed/35047652
http://dx.doi.org/10.1177/2333721420966518
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