“My backpack is so heavy”: Experiences of Latino caregivers of family with early‐onset Alzheimer's

Abstract

Background/Objectives While it is well‐known that caregiving can have adverse effects on the physical and mental health of informal caregivers and their families, caregivers of those with early‐onset Alzheimer's Disease (EOAD) may have distinct needs. Little is written about the experiences of Latino caregivers of family members with EOAD, especially inherited forms. This study's objective was to explore the experiences and needs of Latino caregivers of persons with EOAD. Methods Five focus group discussions (FGDs) were conducted among 27 informal caregivers of Latinos with EOAD who were recruited through an AD clinic in Los Angeles. Results The stress of caregiving was compounded by other pressures and worries, such as taking care of young children, providing financially for family, caregivers' own co‐morbidities, and contemplating their own risk of inheriting EOAD. Resources for monolingual Spanish speakers were scarce. Participants had two primary unmet needs: information and support services. Participants lacked information about how to provide appropriate care, which heightened fears. Difficulty in obtaining a diagnosis from physicians who were uninformed about EOAD was also common. Recommended topics for informational campaigns included how‐to videos on caring for a loved one but also topics related to self‐care for caregivers. Conclusions Our results underscore the need to tailor programs for caregivers of family members with EOAD. Educational campaigns could help to dispel myths and misconceptions, reduce stigma associated with EOAD, and encourage more people to seek timely care. Additional psychosocial support, such as support groups, could build solidarity and self‐efficacy. Better access to dual‐language information and support could encourage early help‐seeking but also improve caregivers' quality of life as they manage long‐term caregiving responsibilities.

2022 Alzheimer's disease facts and figures

“…research but may also result in more culturally appropriate and effective services. [420][421][422][423][424][425][426][427][428][429][430][431][432] In addition, a greater understanding is needed of how multiple chronic diseases (multimorbidity) intersect with dementia among Black people, indigenous peoples and people of color. 433…”

“…This hinders the progress of all Alzheimer's disease caregiving research, and, by extension, if these individuals continue to lack representation in Alzheimer's research, they will not receive the benefits of prevention, treatment or care innovations 413 . Establishing stronger relationships with existing organizations and resources in Black communities, indigenous communities and communities of color offers the potential of research‐based partnerships that not only enhance representation in Alzheimer's disease research but may also result in more culturally appropriate and effective services 420–432 . In addition, a greater understanding is needed of how multiple chronic diseases (multimorbidity) intersect with dementia among Black people, indigenous peoples and people of color 433 …”

PSEN1 c.1292C<A Variant and Early-Onset Alzheimer’s Disease: A Scoping Review

“…Of the 42 studies, two were conducted on members of families with a history of EOAD ( Withers et al, 2019 , 2021 ). In the preclinical stage, two of the studies were conducted on PSEN variant carriers ( Ringman et al, 2004 , 2007a ) and 12 on subjects with a history or carriers of EOAD-associated variants Ringman et al, 2008a , b , 2011 , 2012b , d , e ; Golob et al, 2009 ; Medina et al, 2011 , 2021 ; Braskie et al, 2013 ; Petok et al, 2018 ; Joe et al, 2019 ).…”

“…After presenting the studies exclusively to PSEN , we categorized those who reported in combination with APP . In Table 5 , we present these articles in three categories: first, articles with PSEN1 and APP ( Ringman et al, 2007b , 2008a , b , 2010 , 2011 , 2012a , b , c , d , e ; Golob et al, 2009 ; Apostolova et al, 2011 ; Braskie et al, 2012 , 2013 ; Lee et al, 2013 ; Joe et al, 2019 ; Medina et al, 2021 ; Singer et al, 2021 ); second, articles with PSEN1, PSEN2 , and APP variants ( Albrecht et al, 2009 ; Medina et al, 2011 ; Ringman et al, 2016 ; Petok et al, 2018 ), and finally, those articles who reported families with a history of EOAD ( Withers et al, 2019 ) and another with A431E PSEN1 and an unknown mutation ( Withers et al, 2021 ).…”

“…The authors found that providing information about the genetic bases of AD increased the interest of people with a history of ADAD for genetic testing. The other article assessed the experiences and needs of caregivers ( Withers et al, 2021 ) and found the stress of informal caregivers comes from different sources beyond caregiving, such as knowing their own risk, caring for other family members including children, providing financially, their own health, and diagnosis access, and their main need is to access information in their own language.…”