We aimed to identify sources of caregiver burden in middle-aged and older Latino caregivers of people with Alzheimer disease and related dementia (ADRD).
Methods:
Participants were recruited through an agreement with the Rush Alzheimer’s Disease Center Clinic Data Repository. We conducted semistructured interviews with 16 middle-aged and older Latinos who were the primary caregiver for a family member diagnosed with ADRD. The interview guide consisted of questions and probes to capture participants’ perceptions of family caregiving. Direct content analysis was performed.
Results:
Participants were aged 50 to 75 years (n = 16) and a majority female (n = 12). The sources of burden identified were (1) caregiver responsibilities, (2) caregiving-related health decline, (3) lack of support, (4) financial status, (5) vigilance, and (6) concerns about the future.
Conclusions:
The influence of gender roles seemed to play a role in caregivers’ perceptions of sources of burden, especially on caregiver responsibilities and perceptions of lack of support. Latinos cultural values such as familismo and marianismo likely reinforced gender disparities in family caregiving.
McCurrySMLogsdonRGTeriLVitielloMV. Sleep disturbances in caregivers of persons with dementia: contributing factors and treatment implications. Sleep Med Rev. 2007;11(2):143–153. doi: 10.1016/j.smrv.2006.09.002.
3.
OrgetaVMiranda-CastilloC. Does physical activity reduce burden in carers of people with dementia? A literature review. Int J Geriatr Psychiatry. 2014;29(8):771–783. doi:10.1002/gps.4060.
4.
LavelaSLAtherN. Psychological health in older adult spousal caregivers of older adults. Chronic Illn. 2010;6(1):67–80. doi:10.1177/1742395309356943.
5.
FredmanLCauleyJAHochbergMEnsrudKEDorosG. Mortality associated with caregiving, general stress, and caregiving-related stress in elderly women: results of caregiver-study of osteoporotic fractures. J Am Geriatr Soc. 2010;58(5):937–943. doi:10.1111/j.1532-5415.2010.02808.x.
ChinALNegashSHamiltonR. Diversity and disparity in dementia: the impact of ethnoracial differences in Alzheimer’s disease. Alzheimer Dis Assoc Disord. 2012;25(3):187–195. doi:10.1097/WAD.0b013e318211c6c9.
8.
MayedaERGlymourMMQuesenberryCPJohnsonJKWhitmerRADisparitiesH. Survival after dementia diagnosis in five racial/ethnic groups. Alzheimer’s Dement. 2018;13(7):761–769. doi:10.1016/j.jalz.2016.12.008.
9.
NearySRMahoneyDF. Dementia caregiving: the experiences of Hispanic/Latino Caregivers. J Transcult Nurs. 2005;16(2):163–170. doi:10.1177/1043659604273547.
10.
JanevicMRConnellCM. Racial, ethnic, and cultural differences in the dementia caregiving experience: recent findings. Gerontologist. 2001;41(3):334–347. doi:10.1093/geront/41.3.334.
11.
PinquartMSörensenS. Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: a meta-analysis. Gerontologist. 2005;45(1):90–106.
12.
National Hispanic Council on Aging. 2017 Status of Hispanic Older Adults: Insights from the Field – Caregivers Edition. Washington, DC: National Hispanic Council on Aging; 2017.
13.
GelmanCR. Familismo and its impact on the family caregiving of latinos with Alzheimer’s disease: a complex narrative. Res Aging. 2014;36(1):40–71. doi:10.1177/0164027512469213.
14.
BorrayoEAGoldwaserGVacha-HaaseTHepburnKW. An inquiry into Latino caregivers’ experience caring for older adults with Alzheimer’s disease and related dementias. J Appl Gerontol. 2007;26(5):486–505. doi:10.1177/0733464807305551.
15.
ConnellCMJanevicMRGallantMP. The costs of caring: impact of dementia on family caregivers. J Geriatr Psychiatry Neurol. 2001;14(4):179–187. doi:10.1177/089198870101400403.
16.
AndradeFCD. Overview. In: AngelJLTorres-GilFMarkidesK, eds. Aging, Health, and Longevity in the Mexican-Origin Population. Boston, MA: Springer; 2012:185–192. doi:10.1007/978-1-4614-1867-2.
17.
ArandaMPKnightBG. The influence of ethnicity and culture on the caregiver stress and coping process: a sociocultural review and analysis. Gerontologist. 1997;37(3):342–354.
18.
Arévalo-FlechasLCActonGEscamillaMIBonnerPNLewisSL. Latino Alzheimer’s caregivers: what is important to them?J Manag Psychol. 2014;29(6):661–684. doi:10.1108/JMP-11-2012-0357.
19.
KnightBGRobinsonGSFlynn LongmireCVChunMNakaoKKimJH. Cross cultural issues in caregiving for persons with dementia: do familism values reduce burden and distress?Ageing Int. 2002;27(3):70–94. doi:10.1007/s12126-003-1003-y.
20.
WellsJNCagleCSBradleyPJ. Building on Mexican-American cultural values. Nursing (Lond). 2006;36(7):20–21.
21.
AdamsBArandaPKempBTakagiK.Ethnic and gender differences in distress among anglo American, African American, Japanese American, and Mexican American Spousal caregivers of persons with dementia. 2002;8(4):279–301.
22.
KnightBGSayeghP.Cultural values and caregiving: the updated sociocultural stress and coping model. J Gerontol B Psychol Sci Soc Sci. 2010;65B(1):5–13. doi:10.1093/geronb/gbp096.
23.
TongASainsburyPCraigJ. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Heal Care. 2007;19(6):349–357.
24.
HsiehHFShannonSE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277–1288. doi:10.1177/1049732305276687.
25.
CampbellJLQuincyCOssermanJPedersenOK. Coding in-depth semistructured interviews: problems of unitization and intercoder reliability and agreement. Soc Methods Res. 2013;42(3):294–320. doi:10.1177/0049124113500475.
26.
JolicoeurPMMaddenT. The good daughters: acculturation and caregiving among Mexican-American women. J Aging Stud. 2002;16(2):107–120. doi:10.1016/S0890-4065(02)00038-5.
27.
AnthonyKPJohn GeldhofGMendez-LuckCA. Characterizing Caregiving intensity among Mexican-origin Women caregivers. Gerontologist. 2017;57(6):1084–1092. doi:10.1093/geront/gnw090.
28.
VirudachalamSLongJAHarhayMOPolskyDEFeudtnerC. Prevalence and patterns of cooking dinner at home in the USA: national Health and nutrition examination survey (NHANES) 2007-2008. Public Health Nutr. 2014;17(5):1022–1030. doi:10.1017/S1368980013002589.
29.
Álvarez LópezE.Food, cultural identity, and the Body. New Recipes for Latinas’ Emerging Selves. In: BarbaraONarbona-CarriónMD, eds. Codifying the National Self: Spectators, Actors and the American Dramatic Text. Brussels, Belgium: Peter Lang; 2006:215–232.
30.
Mendez-LuckCAGeldhofGJAnthonyKPSteersWNMangioneCMHaysRD. Orientation to the caregiver role among latinas of Mexican origin. Gerontologist. 2016;56(6):e99–e108. doi:10.1093/geront/gnw087.
31.
NealMBHammerLB. Working Couples Caring for Children and Aging Parents: Effects on Work and Well-Being. Mahwah, NJ: Lawrence Erlbaum Associates; 2007.
32.
SchulzRBeachSR. Caregiving as a risk factor for mortality. Am Med Assoc. 1999;282(23):2215–2219. doi:10.1001/jama.282.23.2215.
33.
AbdollahpourINedjatSNoroozianMSalimiY. Caregiver Burden: the strongest predictor of self-rated health in caregivers of patients with dementia. J Geriatr Psychiatry Neurol. 2014;27(3):172–180. doi:10.1177/0891988714524627.
34.
LuceroRJJaime-LaraRCortesYI, et al.Hispanic dementia family caregiver’s knowledge, experience, and awareness of self-management: foundations for health information technology interventions. Hisp Heal Care Int. 2019;17(2):49–58. doi:10.1177/1540415318819220. Epub 2018 Dec 27.
35.
TatangeloGMcCabeMMacleodAYouE. “I just don’t focus on my needs.” The unmet health needs of partner and offspring caregivers of people with dementia: a qualitative study. Int J Nurs Stud. 2018;77:8–14. doi:10.1016/j.ijnurstu.2017.09.011.
36.
AblittAJonesGVMuersJ. Living with dementia: a systematic review of the influence of relationship factors. Aging Ment Health. 2009;13(4):497–511. doi:10.1080/13607860902774436.
37.
AshidaSMarcumCSKoehlyLM. Unmet expectations in Alzheimer’s family caregiving: interactional characteristics associated with perceived under-contribution. Gerontologist. 2018;58(2):e46–e55. doi:10.1093/geront/gnx141.
38.
GelmanCR. “La Lucha”: the experiences of latino family caregivers of patients with Alzheimer’s disease. Clin Gerontol Clin Gerontol Clin Gerontol. 2010;33(3):181–193. doi:10.1080/07317111003773643.
39.
HarwoodDGBarkerWWCantillonMLoewensteinDAOwnbyRDuaraR. Depressive symptomatology in first-degree family caregivers of Alzheimer disease patients: a cross-ethnic comparison. Alzheimer Dis Assoc Disord. 1998;12(4):340–346.
40.
JohnRMcMillanB. Exploring caregiver burden among Mexican- Americans: cultural prescriptions, family dilemmas. J Aging Ethn. 1998;1(1):93–111.
41.
SmokowskiPRBacallaoMBuchananRL. Interpersonal mediators linking acculturation stressors to subsequent internalizing symptoms and self-esteem in latino adolescents. J Community Psychol. 2009;37(8):1024–1045. doi:10.1002/jcop.
42.
ShajiKSSmithaKPraveenLKPrinceMJ. Caregivers of people with Alzheimer’s disease: a qualitative study from the Indian 10/66 dementia research network. Int J Geriatr Psychiatry. 2003;18(1):1–6. doi:10.1002/gps.649.
43.
EvansBCBelyeaMJCoonDWUmeE. Activities of daily living in Mexican American caregivers: the key to continuing informal care. J Fam Nurs. 2012;18(4):439–466. doi:10.1177/1074840712450210.
44.
TorresJBSolbergVSCarlstromAH. The myth of sameness among latino men and their machismo. Am J Orthopsychiatry. 2002;72(2):163–181. doi:10.1037/0002-9432.72.2.163.
45.
PapastavrouEKalokerinouAPapacostasSSTsangariHSourtziP. Caring for a relative with dementia: family caregiver burden. J Adv Nurs. 2007;58(5):446–457. doi:10.1111/j.1365-2648.2007.04250.x.
46.
National Hispanic Council on Aging. Status of Hispanic Older Adults: Recommendations from the Field. Washington, DC; 2015. http://www.nhcoa.org/. Accessed November 10, 2018.
ThomeerMBMudrazijaSAngeiJ. How and why does nursing home use differ by race and ethnicity?Journals Gerontol Ser B. 2018;73(4):11–12. doi:10.1093/geronb/gbv056.
49.
MoranoCLBravoM. A psychoeducational model for hispanic Alzheimer’s disease caregivers. Gerontologist. 2002;42(1):122–126.
SkinnerMWYantziNMRosenbergMW. Neither rain nor hail nor sleet nor snow: provider perspectives on the challenges of weather for home and community care. Soc Sci Med. 2009;68(4):682–688. doi:10.1016/j.socscimed.2008.11.022.
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