Alzheimer's disease (AD), a debilitating incurable neurodegenerative disorder, causes progressive deterioration in memory, language, and problem solving. Thus, the prospect of a possible future with AD can raise significant concerns.
Objective
To investigate Latinos’ concerns and actions or planning they undertook to address those concerns after receiving an estimate of their risk of developing late-onset AD by age 85.
Methods
Following receipt of their AD risk information, we conducted semi-structured qualitative interviews with 191 Latinos aged 40–64 who participated in the Información de la Enfermedad de Alzheimer para Latinos (IDEAL) Study. Interviews were conducted in Spanish or English at 6 weeks, 9- and 15-months following risk disclosure.
Results
Fifty-nine participants (30%) had begun planning for a possible future with AD. Some spoke to family members about not wanting to become a burden to them and requested to be placed in a nursing home if they developed AD. Some contemplated making changes to their retirement plans to ensure access to their informal support networks for future care needs. Others with future financial concerns started to save more money and investigate their social security/employee benefits. Several started to get their financial/legal affairs in order, discussed future care wishes with family, educated family about AD, and changed their life plans to ensure they did certain things while still cognitively intact.
Conclusions
AD risk information may motivate Latinos to engage in planning for a possible future with AD, enabling them to retain a sense of personal control and prepare to deal with its consequences.
Clinical trial statement
ClinicalTrials.gov ID: NCT04471779
Date Registered: July 15, 2020
Registry Name: The IDEAL Study: Information About Alzheimer's Disease for Latinos in New York City
ConwayME. Alzheimer’s disease: targeting the glutamatergic system. Biogerontology2020; 21: 257–274.
2.
BelaidiAABushAIAytonS. Apolipoprotein E in Alzheimer’s disease: molecular insights and therapeutic opportunities. Mol Neurodegeneration2025; 20: 47.
3.
GiriMLüYZhangM. Genes associated with Alzheimer’s disease: an overview and current status. Clin Interv Aging2016; 11: 665–681.
4.
LawsSMHoneEGandyS, et al.Expanding the association between the APOE gene and the risk of Alzheimer’s disease: possible roles for APOE promoter polymorphisms and alterations in APOE transcription. J Neurochem2003; 84: 1215–1236.
5.
StockerHMöllersTPernaL, et al.The genetic risk of Alzheimer’s disease beyond APOE ε4: systematic review of Alzheimer’s genetic risk scores. Transl Psychiatry2018; 8: 166.
6.
SureshSSinghSARushendranR, et al.Alzheimer’s disease: the role of extrinsic factors in its development, an investigation of the environmental enigma. Front Neurol2023; 14: 1303111.
7.
LanoiseléeH-MNicolasGWallonD, et al.APP, PSEN1, and PSEN2 mutations in early-onset Alzheimer disease: a genetic screening study of familial and sporadic cases. PLoS Med2017; 14: e1002270.
8.
GiauVVBagyinszkyEYangYS, et al.Genetic analyses of early-onset Alzheimer’s disease using next generation sequencing. Sci Rep2019; 9: 8368.
9.
ValdesPCaldwellABLiuQ, et al.Integrative multiomics reveals common endotypes across PSEN1, PSEN2, and APP mutations in familial Alzheimer’s disease. Alzheimers Res Ther2025; 17: 5.
10.
RobertsJSTersegnoSM. Estimating and disclosing the risk of developing Alzheimer‘s disease: challenges, controversies and future directions. Future Neurol2010; 5: 501–517.
11.
RitchieMSajjadiSAGrillJD. Apolipoprotein E genetic testing in a new age of Alzheimer disease clinical practice. Neurol Clin Pract2024; 14: e200230.
12.
RobertsJSBarberMBrownTM, et al.Who seeks genetic susceptibility testing for Alzheimer’s disease? Findings from a multisite, randomized clinical trial. Genet Med2004; 6: 197–203.
RobertsJSGornickMCCarereDA, et al.Direct-to-Consumer genetic testing: user motivations, decision making, and perceived utility of results. Public Health Genomics2017; 20: 36–45.
15.
RobertsJSUhlmannWR. Genetic susceptibility testing for neurodegenerative diseases: ethical and practice issues. Prog Neurobiol2013; 110: 89–101.
16.
RahmanBMeiserBSachdevP, et al.To know or not to know: an update of the literature on the psychological and behavioral impact of genetic testing for Alzheimer disease risk. Genet Test Mol Biomarkers2012; 16: 935–942.
17.
BroadstockMMichieSMarteauT. Psychological consequences of predictive genetic testing: a systematic review. Eur J Hum Genet2000; 8: 731–738.
18.
BurnsJMJohnsonDKLiebmannEP, et al.Safety of disclosing amyloid status in cognitively normal older adults. Alzheimers Dement2017; 13: 1024–1030.
19.
HeshkaJTPalleschiCHowleyH, et al.A systematic review of perceived risks, psychological and behavioral impacts of genetic testing. Genet Med2008; 10: 19–32.
20.
MillerDT. Psychological impact of genetic testing. In: MillerTW (ed.) Handbook of stressful transitions across the lifespan. New York, NY: Springer, 2010, pp.585–604.
21.
WadeCH. What is the psychosocial impact of providing genetic and genomic health information to individuals? An overview of systematic reviews. Hastings Cent Rep2019; 49: S88–S96.
22.
GreenRCRobertsJSCupplesLA, et al.Disclosure of APOE genotype for risk of Alzheimer’s disease. N Engl J Med2009; 361: 245–254.
23.
RonaySTsaoJW. The importance of Apolipoprotein E genetic testing in the era of amyloid lowering therapies. Neurol Clin Pract2024; 14: e200258.
24.
LinnenbringerERobertsJSHirakiS, et al.I know what you told me, but this is what I think:” perceived risk of Alzheimer disease among individuals who accurately recall their genetics-based risk estimate. Genet Med2010; 12: 219–227.
25.
ParensEAppelbaumPS. On what we have learned and still need to learn about the psychosocial impacts of genetic testing. Hastings Cent Rep2019; 49: S2–S9.
26.
RobertsJS. Assessing the psychological impact of genetic susceptibility testing. Hastings Cent Rep2019; 49: S38–S43.
27.
RomeroLJGarryPJSchuylerM, et al.Emotional responses to APO E genotype disclosure for Alzheimer disease. J Genet Couns2005; 14: 141–150.
28.
Alzheimer’s Association. 2025 Alzheimer’s disease facts and figures. Special report-American perspectives on early detection of Alzheimer’s disease in the era of treatment, 2025.
29.
LazarusRSFolkmanS. Stress, appraisal, and coping. New York, NY: Springer Publishing Company, Inc., 1984.
30.
LazarusRSFolkmanS. Transactional theory and research on emotions and coping. Eur J Pers1987; 1: 141–169.
31.
FolkmanSLazarusRS. Coping as a mediator of emotion. J Pers Soc Psychol1988; 54: 466–475.
32.
GoodingHCOrganistaKBurackJ, et al.Genetic susceptibility testing from a stress and coping perspective. Soc Sci Med2006; 62: 1880–1890.
33.
RobertsJSLaRusseSAKatzenH, et al.Reasons for seeking genetic susceptibility testing among first-degree relatives of people with Alzheimer disease. Alzheimer Dis Assoc Disord2003; 17: 86–93.
34.
BemelmansSASATrompKBunnikEM, et al.Psychological, behavioral and social effects of disclosing Alzheimer’s disease biomarkers to research participants: a systematic review. Alzheimers Res Ther2016; 8: 46.
35.
ChaoSRobertsJSMarteauTM, et al.Health behavior changes after genetic risk assessment for Alzheimer disease: the REVEAL study. Alzheimer Dis Assoc Disord2008; 22: 94–97.
36.
ZickCDMathewsCJRobertsJS, et al.Genetic testing for Alzheimer’s disease and its impact on insurance purchasing behavior. Health Aff (Millwood)2005; 24: 483–490.
37.
PopescuDLLeeAKArthurE, et al.APOE Genotype disclosure influences decisions about future planning but not adoption of healthy lifestyle changes in cognitively unimpaired individuals. J Geriatr Psychiatry Neurol2024; 37: 482–495.
38.
MilneRDiazABadgerS, et al.At, with and beyond risk: expectations of living with the possibility of future dementia. Sociol Health Illn2018; 40: 969–987.
39.
McLennanVEJBoddyJHMDalyMG, et al.Relinquishing or taking control? Community perspectives on barriers and opportunities in advance care planning. Aust Health Rev2015; 39: 528.
BryantJTuronHWallerA, et al.Effectiveness of interventions to increase participation in advance care planning for people with a diagnosis of dementia: a systematic review. Palliat Med2019; 33: 262–273.
GlaudemansJJde JongAEOnwuteaka PhilipsenBD, et al.How do Dutch primary care providers overcome barriers to advance care planning with older people? A qualitative study. Fam Pract2019; 36: 219–224.
44.
Hasmanová MarhánkováJSoares MouraE. What can I plan at this age?’ Expectations regarding future and planning in older age. Sociol Res Online2023; 29: 120–136.
45.
MusaISeymourJNarayanasamyMJ, et al.A survey of older peoples’ attitudes towards advance care planning. Age Ageing2015; 44: 371–376.
46.
SchickedanzADSchillingerDLandefeldCS, et al.A clinical framework for improving the advance care planning process: start with patients’ self-identified barriers. J Am Geriatr Soc2009; 57: 31–39.
47.
PiersRDvan EechoudIJVan CampS, et al.Advance care planning in terminally ill and frail older persons. Patient Educ Couns2013; 90: 323–329.
48.
VegaIECabreraLYWygantCM, et al.Alzheimer’s disease in the Latino community: intersection of genetics and social determinants of health. J Alzheimers Dis2017; 58: 979–992.
49.
MarquezDXPerezAJohnsonJK, et al.Increasing engagement of Hispanics/Latinos in clinical trials on Alzheimer’s disease and related dementias. Alzheimers Dement (N Y)2022; 8: e12331.
50.
ChinALNegashSHamiltonR. Diversity and disparity in dementia: the impact of ethnoracial differences in Alzheimer disease. Alzheimer Dis Assoc Disord2011; 25: 187–195.
51.
JangYYoonHParkNS, et al.Asian Americans’ concerns and plans about Alzheimer’s disease: the role of exposure, literacy and cultural beliefs. Health Soc Care Community2018; 26: 199–206.
52.
LenkoRVoepel-LewisTRobinson-LaneSG, et al.Racial and ethnic differences in informal and formal advance care planning among U.S. older adults. J Aging Health2022; 34: 1281.
53.
SudoreRLSchillingerDKnightSJ, et al.Uncertainty about advance care planning treatment preferences among diverse older adults. J Health Commun2010; 15: 159–171.
54.
WetmoreJBRodriguezSDiaz CaroD, et al.Designing and implementing the IDEAL study: a randomized clinical trial of APOE genotype disclosure for late-onset Alzheimer’s disease in an urban Latino population. Alzheimers Dement (N Y)2024; 10: e70016.
55.
KroenkeKSpitzerRLWilliamsJB. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med2001; 16: 606–613.
SabogalFMarínGOtero-SabogalR, et al.Hispanic familism and acculturation: what changes and what doesn’t?Hisp J Behav Sci1987; 9: 397–412.
62.
JohnRResendizRVargasD,et al.Beyond familism?: familism as explicit motive for eldercare among Mexican American caregivers. J Cross Cult Gerontol1997; 12: 145–162.
63.
GonzalezL. Predicting racial disparities in nursing home admission: the role of discrimination, stressors, and neighborhood context. Sociol Q2020; 61: 1–21.
64.
ThomeerMBMudrazijaSAngelJL. How do race and Hispanic ethnicity affect nursing home admission? Evidence from the health and retirement study. J Gerontol B Psychol Sci Soc Sci2015; 70: 628–638.
65.
GorekBMartinJWhiteN, et al.Culturally competent care for Latino elders in long-term care settings. Geriatr Nurs2002; 23: 272–275.
66.
MartinezILAcosta GonzalezE. Care v. caring: obligation, duty, and love among Latino Alzheimer’s family caregivers. J Appl Gerontol2022; 41: 1744–1751.
67.
AngelJLAngelRJMcClellanJL, et al.Nativity, declining health, and preferences in living arrangements among elderly Mexican Americans: implications for long-term care. Gerontologist1996; 36: 464–473.
68.
Mendez-LuckCAAmorimCAnthonyKP, et al.Beliefs and expectations of family and nursing home care among Mexican-origin caregivers. J Women Aging2017; 29: 460–472.
69.
MuiACBurnetteD. Long-term care service use by frail elders: is ethnicity a factor?Gerontologist1994; 34: 190–198.
70.
HerreraAPAngelJLVenegasCD, et al.Estimating the demand for long-term care among aging Mexican Americans: cultural preferences versus economic realities. In: AngelJLTorres-GilFMarkidesK (eds) Aging, health, and longevity in the Mexican-origin population. Boston, MA: Springer US, 2012, pp.259–276.
71.
SörensenSMakWChapmanB, et al.The relationship of preparation for future care to depression and anxiety in older primary care patients at 2-year follow-up. Am J Geriatr Psychiatry2012; 20: 887–894.
72.
SteeleMPinquartMSorensenS. Preparation dimensions and styles in long-term care. Clin Gerontol2003; 26: 105–122.
73.
LynnJ. Measuring quality of care at the end of life: a statement of principles. J Am Geriatr Soc1997; 45: 526–527.
ZickCDSmithKRMayerRN. Planning ahead or living a day at a time? A family history of AD and retirement planning. Am J Alzheimers Dis Other Demen2016; 31: 516–523.
78.
KrakauerELCrennerCFoxK. Barriers to optimum end-of-life care for minority patients. J Am Geriatr Soc2002; 50: 182–190.
79.
KwakJHaleyWE. Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist2005; 45: 634–641.
80.
SudoreRLSchillingerDKatenMT, et al.Engaging diverse English- and spanish-speaking older adults in advance care planning: the PREPARE randomized clinical trial. JAMA Intern Med2018; 178: 1616–1625.
