Experiences managing behavioral symptoms among Latino caregivers of Latino older adults with dementia and memory problems: a qualitative study.
Alzheimer’s disease
Antipsychotics
Dementia
Latinos
Journal
BMC geriatrics
ISSN: 1471-2318
Titre abrégé: BMC Geriatr
Pays: England
ID NLM: 100968548
Informations de publication
Date de publication:
31 Aug 2024
31 Aug 2024
Historique:
received:
13
02
2024
accepted:
22
08
2024
medline:
1
9
2024
pubmed:
1
9
2024
entrez:
31
8
2024
Statut:
epublish
Résumé
Latinos are more likely than non-Latino Whites to develop dementia and be prescribed antipsychotics for dementia-related behavioral symptoms. Antipsychotics have significant risks yet are often overprescribed. Our understanding of how Latino caregivers of Latino older adults living with dementia perceive and address behavioral issues is limited, impeding our ability to address the root causes of antipsychotic overprescribing. We interviewed Latino older adults' caregivers and community-based organization workers serving older adults with cognitive impairment (key informants), focusing on the management of behavioral symptoms and experiences with health services. We interviewed 8 caregivers and 2 key informants. Caregivers were the spouses, children, or grandchildren of the older adult living with cognitive impairment; their ages ranged from 30 to 95. We identified three categories of how caregivers learned about, managed, and coped with behavioral symptoms: caregivers often faced shortcomings with dementia care in the medical system, receiving limited guidance and support; caregivers found community organizations and senior day centers to be lifelines, as they received relevant, timely advice and support, caregivers often devised their own creative strategies to manage behavioral symptoms. In-depth interviews suggest that the healthcare system is failing to provide support for behavioral symptoms from dementia; caregivers of Latino older adults rely on community organizations instead.
Sections du résumé
BACKGROUND
BACKGROUND
Latinos are more likely than non-Latino Whites to develop dementia and be prescribed antipsychotics for dementia-related behavioral symptoms. Antipsychotics have significant risks yet are often overprescribed. Our understanding of how Latino caregivers of Latino older adults living with dementia perceive and address behavioral issues is limited, impeding our ability to address the root causes of antipsychotic overprescribing.
METHODS
METHODS
We interviewed Latino older adults' caregivers and community-based organization workers serving older adults with cognitive impairment (key informants), focusing on the management of behavioral symptoms and experiences with health services.
RESULTS
RESULTS
We interviewed 8 caregivers and 2 key informants. Caregivers were the spouses, children, or grandchildren of the older adult living with cognitive impairment; their ages ranged from 30 to 95. We identified three categories of how caregivers learned about, managed, and coped with behavioral symptoms: caregivers often faced shortcomings with dementia care in the medical system, receiving limited guidance and support; caregivers found community organizations and senior day centers to be lifelines, as they received relevant, timely advice and support, caregivers often devised their own creative strategies to manage behavioral symptoms.
CONCLUSION
CONCLUSIONS
In-depth interviews suggest that the healthcare system is failing to provide support for behavioral symptoms from dementia; caregivers of Latino older adults rely on community organizations instead.
Identifiants
pubmed: 39217285
doi: 10.1186/s12877-024-05323-4
pii: 10.1186/s12877-024-05323-4
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
725Subventions
Organisme : US National Institute on Aging:
ID : P30AG021684
Organisme : NIH HHS
ID : ULT1TR001881
Pays : United States
Organisme : NIH HHS
ID : K24AG047899
Pays : United States
Organisme : US National Institute on Aging
ID : T35AG026736
Informations de copyright
© 2024. The Author(s).
Références
Hummer RA, Hayward MD. Hispanic Older Adult Health & Longevity in the United States: current patterns & concerns for the future. Daedalus. 2015;144(2):20–30.
pubmed: 26082561
pmcid: 4465804
doi: 10.1162/DAED_a_00327
Plassman BL, Langa KM, Fisher GG, Heeringa SG, Weir DR, Ofstedal MB, et al. Prevalence of dementia in the United States: the aging, demographics, and memory study. Neuroepidemiology. 2007;29(1–2):125–32.
pubmed: 17975326
pmcid: 2705925
doi: 10.1159/000109998
Hersch EC, Falzgraf S. Management of the behavioral and psychological symptoms of dementia. Clin Interv Aging. 2007;2(4):611.
pubmed: 18225462
pmcid: 2686333
Cohen-Mansfield J, Dakheel-Ali M, Marx MS, Thein K, Regier NG. Which unmet needs contribute to behavior problems in persons with advanced dementia? Psychiatry Res. 2015;228(1):59–64.
pubmed: 25933478
pmcid: 4451402
doi: 10.1016/j.psychres.2015.03.043
Aging NHC. 2017 Status of Hispanic Older Adults: Insights from the field – Caregivers Edition. Washington, D.C.; 2017 2017.
Haan MN, Mungas DM, Gonzalez HM, Ortiz TA, Acharya A, Jagust WJ. Prevalence of dementia in older latinos: the influence of type 2 diabetes Mellitus, Stroke and genetic factors. J Am Geriatr Soc. 2003;51(2):169–77.
pubmed: 12558712
doi: 10.1046/j.1532-5415.2003.51054.x
Hazzouri AZA, Haan MN, Neuhaus JM, Pletcher M, Peralta CA, López L et al. Cardiovascular Risk score, cognitive decline, and dementia in older Mexican americans: the role of sex and education. J Am Heart Association.2(2):e004978.
Rodriquez EJ, Livaudais-Toman J, Gregorich SE, Jackson JS, Nápoles AM, Pérez-Stable EJ. Relationships between allostatic load, unhealthy behaviors, and depressive disorder in U.S. adults, 2005–2012 NHANES. Prev Med. 2018;110:9–15.
pubmed: 29421445
pmcid: 5845838
doi: 10.1016/j.ypmed.2018.02.002
Katon W, Pedersen HS, Ribe AR, Fenger-Grøn M, Davydow D, Waldorff FB, et al. Effect of Depression and Diabetes Mellitus on the risk for dementia: a National Population-based Cohort Study. JAMA Psychiatry. 2015;72(6):612–9.
pubmed: 25875310
pmcid: 4666533
doi: 10.1001/jamapsychiatry.2015.0082
Clark CM, DeCarli C, Mungas D, Chui HI, Higdon R, Nuñez J, et al. Earlier onset of Alzheimer Disease symptoms in latino individuals compared with anglo individuals. Arch Neurol. 2005;62(5):774–8.
pubmed: 15883265
doi: 10.1001/archneur.62.5.774
Sink KM, Covinsky KE, Newcomer R, Yaffe K. Ethnic differences in the prevalence and pattern of dementia-related behaviors. J Am Geriatr Soc. 2004;52(8):1277–83.
pubmed: 15271114
doi: 10.1111/j.1532-5415.2004.52356.x
American Geriatrics Society. Don’t use antipsychotics as the first choice to treat behavioral and psychological symptoms of dementia. Philadelphia, PA: ABIM Foundation. 2015 [ http://www.choosingwisely.org/clinician-lists/american-geriatrics-society-antipsychotics-for-dementia/
Banerjee S. The use of antipsychotic medication for people with dementia: Time for action. London, England; 2009 October 3, 2009.
By the American Geriatrics Society Beers Criteria
doi: 10.1111/jgs.15767
ABIM Foundation. Choosing Wisely: Treating Disruptive Behavior in People with Dementia 2017 [ https://www.choosingwisely.org/patient-resources/antipsychotic-drugs-for-people-with-dementia/
Gitlin LN, Kales HC, Lyketsos CG. Nonpharmacologic management of behavioral symptoms in dementia. JAMA. 2012;308(19):2020–9.
pubmed: 23168825
pmcid: 3711645
doi: 10.1001/jama.2012.36918
Maust DT, Strominger J, Bynum JPW, Langa KM, Gerlach LB, Zivin K, et al. Prevalence of psychotropic and opioid prescription fills among Community-Dwelling older adults with dementia in the US. JAMA. 2020;324(7):706–8.
pubmed: 32808997
pmcid: 7435346
doi: 10.1001/jama.2020.8519
Xiong GL, Filshtein T, Beckett LA, Hinton L. Antipsychotic use in a Diverse Population with Dementia: a retrospective review of the National Alzheimer’s Coordinating Center Database. J Neuropsychiatry Clin Neurosci. 2015;27(4):326–32.
pubmed: 26488486
pmcid: 4617662
doi: 10.1176/appi.neuropsych.15010020
Centers for Disease Control and Prevention. What Is Health Literacy? 2021 [updated May 19, 2021. https://www.cdc.gov/healthliteracy/learn/index.html
Charmaz K. Constructing grounded theory: A practical guide through qualitative analysis. Second edition. Thousand Oaks, CA: Sage; 2014 2014.
Charmaz K. Constructing grounded theory: a practical guide through qualitative analysis. London: Sage; 2006. 2006//.
Gibbs GR. Thematic coding and categorizing. Analyzing Qualitative data. 2007;703:38–56.
doi: 10.4135/9781849208574.n4
Saldana J. The Coding Manual for qualitative researchers. London, UK: Sage Publications, Inc.; 2009.
Corbin J, Strauss A. Basics of qualitative research: techniques and procedures for developing grounded theory. Sage; 2014.
Corbin J, Strauss AC. Basics of qualitative research: techniques and procedures for developing grounded theory. Thousand Oaks, CA: Sage Publications, Inc.; 2008. 2008//.
doi: 10.4135/9781452230153
Birks M, Chapman Y, Francis K. Memoing in qualitative research: probing data and processes. J Res Nurs. 2008;13(1):68–75.
doi: 10.1177/1744987107081254
Borrayo EA, Goldwaser G, Vacha-Haase T, Hepburn KW. 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
Neary SR, Mahoney DF. Dementia caregiving: the experiences of Hispanic/Latino caregivers. J Transcult Nurs. 2005;16(2):163–70.
pubmed: 15764640
doi: 10.1177/1043659604273547
Gelman CR. La Lucha: the experiences of latino family caregivers of patients with Alzheimer’s disease. Clin Gerontologist. 2010;33(3):181–93.
doi: 10.1080/07317111003773643
Turner RM, Hinton L, Gallagher-Thompson D, Tzuang M, Tran C, Valle R. Using an Emic Lens to understand how latino families cope with dementia behavioral problems. Am J Alzheimer’s Disease Other Dementias
doi: 10.1177/1533317514566115
Iribarren S, Stonbraker S, Suero-Tejeda N, Granja M, Luchsinger JA, Mittelman M, et al. Information, communication, and online tool needs of hispanic family caregivers of individuals with Alzheimer’s disease and related dementias. Inf Health Soc Care. 2019;44(2):115–34.
doi: 10.1080/17538157.2018.1433674
Achterberg WP, Pieper MJC, van Dalen-Kok AH, De Waal MWM, Husebo BS, Lautenbacher S et al. Pain management in patients with dementia. Clin Interv Aging. 2013:1471–82.
Hodgson N, Gitlin LN, Winter L, Hauck WW. Caregiver’s perceptions of the Relationship of Pain to behavioral and Psychiatric symptoms in Older Community-residing adults with dementia. Clin J Pain. 2014;30(5).
Barrado-Martín Y, Nair P, Anantapong K, Aker N, Moore KJ, Smith CH, et al. Family caregivers’ and professionals’ experiences of supporting people living with dementia’s nutrition and hydration needs towards the end of life. Health Soc Care Commun. 2022;30(1):307–18.
doi: 10.1111/hsc.13404
Valcour VG, Masaki KH, Curb JD, Blanchette PL. The detection of Dementia in the primary care setting. Arch Intern Med. 2000;160(19):2964–8.
pubmed: 11041904
doi: 10.1001/archinte.160.19.2964
Foley T, Boyle S, Jennings A, Smithson WH. We’re certainly not in our comfort zone: a qualitative study of GPs’ dementia-care educational needs. BMC Fam Pract. 2017;18(1):1–10.
doi: 10.1186/s12875-017-0639-8
Alzheimer’s Disease International. World Alzheimer Report 2019: attitudes to dementia London. England: Alzheimer’s Disease International (ADI); 2019.
Hinton L, Franz CE, Reddy G, Flores Y, Kravitz RL, Barker JC. Practice constraints, behavioral problems, and dementia care: primary care physicians’ perspectives. J Gen Intern Med. 2007;22(11):1487–92.
pubmed: 17823840
pmcid: 2219799
doi: 10.1007/s11606-007-0317-y
Apesoa-Varano EC, Barker JC, Hinton L. Curing and caring: the work of primary care physicians with dementia patients. Qual Health Res. 2011;21(11):1469–83.
pubmed: 21685311
doi: 10.1177/1049732311412788
Jennings LA, Reuben DB, Evertson LC, Serrano KS, Ercoli L, Grill J, et al. Unmet needs of caregivers of individuals referred to a Dementia Care Program. J Am Geriatr Soc. 2015;63(2):282–9.
pubmed: 25688604
pmcid: 4332558
doi: 10.1111/jgs.13251
Kadu MK, Stolee P. Facilitators and barriers of implementing the chronic care model in primary care: a systematic review. BMC Fam Pract. 2015;16(1):12.
pubmed: 25655401
pmcid: 4340610
doi: 10.1186/s12875-014-0219-0
Baumann AO, Deber RB, Silverman BE, Mallette CM. Who cares? Who cures? The ongoing debate in the provision of health care. J Adv Nurs. 1998;28(5):1040–5.
pubmed: 9840875
doi: 10.1046/j.1365-2648.1998.00809.x
De Valck C, Bensing J, Bruynooghe R, Batenburg V. Cure-oriented versus care-oriented attitudes in medicine. Patient Educ Couns. 2001;45(2):119–26.
pubmed: 11687325
doi: 10.1016/S0738-3991(00)00201-9
Choudhury D, Nortjé N. The hidden curriculum and integrating cure- and care-based approaches to Medicine. HEC Forum; 2020.
Reynoso-Vallejo H. Support group for latino caregivers of dementia elders: Cultural humility and cultural competence. Ageing Int. 2009;34(1):67–78.
doi: 10.1007/s12126-009-9031-x
Weitzman P, Neal L, Chen H, Levkoff SE. Designing a culturally attuned bilingual educational website for US latino dementia caregivers. Ageing Int. 2008;32(1):15–24.
doi: 10.1007/s12126-008-9000-9
Bank AL, Argüelles S, Rubert M, Eisdorfer C, Czaja SJ. The value of telephone support groups among ethnically diverse caregivers of persons with dementia. Gerontologist. 2006;46(1):134–8.
pubmed: 16452294
doi: 10.1093/geront/46.1.134
Askari N, Bilbrey AC, Garcia Ruiz I, Humber MB, Gallagher-Thompson D. Dementia awareness campaign in the latino community: a novel community engagement pilot training program with promotoras. Clin Gerontologist. 2018;41(3):200–8.
doi: 10.1080/07317115.2017.1398799
Aranda MP, Villa VM, Trejo L, Ramírez R, Ranney M. El Portal latino Alzheimer’s project: model program for latino caregivers of people with Alzheimer’s disease. Soc Work. 2003;48(2):259–71.
pubmed: 12718421
doi: 10.1093/sw/48.2.259
Llanque SM, Enriquez M. Interventions for hispanic caregivers of patients with dementia: a review of the literature. Am J Alzheimer’s Disease Other Dementias
doi: 10.1177/1533317512439794
Perales J, Moore WT, Fernandez C, Chavez D, Ramirez M, Johnson D, et al. Feasibility of an Alzheimer’s disease knowledge intervention in the latino community. Ethn Health. 2020;25(5):747–58.
pubmed: 29457466
doi: 10.1080/13557858.2018.1439899
Possin KL, Merrilees JJ, Dulaney S, Bonasera SJ, Chiong W, Lee K, et al. Effect of collaborative dementia care via telephone and internet on quality of life, caregiver well-being, and health care use: the care ecosystem randomized clinical trial. JAMA Intern Med. 2019;179(12):1658–67.
pubmed: 31566651
pmcid: 6777227
doi: 10.1001/jamainternmed.2019.4101
Possin KL, Merrilees J, Bonasera SJ, Bernstein A, Chiong W, Lee K, et al. Development of an adaptive, personalized, and scalable dementia care program: early findings from the Care Ecosystem. PLoS Med. 2017;14(3):e1002260.
pubmed: 28323819
pmcid: 5360211
doi: 10.1371/journal.pmed.1002260
Nyman SR, Szymczynska P. Meaningful activities for improving the wellbeing of people with dementia: beyond mere pleasure to meeting fundamental psychological needs. Perspect Public Health. 2016;136(2):99–107.
pubmed: 26933079
doi: 10.1177/1757913915626193
Roland KP, Chappell NL. Meaningful activity for persons with dementia: family caregiver perspectives. Am J Alzheimer’s Disease Other Dementias
doi: 10.1177/1533317515576389
Allison TA, Gubner JM, Oh A, Harrison KL, Pham K, Barnes DE et al. Meaningful activities and sources of meaning for Community-Dwelling people living with dementia. J Am Med Dir Assoc. 2021.
Varadaraj V, Munoz B, Deal JA, An Y, Albert MS, Resnick SM, et al. Association of Vision Impairment with Cognitive Decline across Multiple Domains in older adults. JAMA Netw Open. 2021;4(7):e2117416–e.
pubmed: 34269806
pmcid: 8285732
doi: 10.1001/jamanetworkopen.2021.17416
Lin FR, Metter EJ, O’Brien RJ, Resnick SM, Zonderman AB, Ferrucci L. Hearing loss and Incident Dementia. Arch Neurol. 2011;68(2):214–20.
pubmed: 21320988
pmcid: 3277836
doi: 10.1001/archneurol.2010.362
Thomson RS, Auduong P, Miller AT, Gurgel RK. Hearing loss as a risk factor for dementia: a systematic review. Laryngoscope Invest Otolaryngol. 2017;2(2):69–79.
doi: 10.1002/lio2.65
Tani Y, Fujiwara T, Kondo K. Association between adverse childhood experiences and dementia in older Japanese adults. JAMA Netw Open. 2020;3(2):e1920740–e.
pubmed: 32031646
doi: 10.1001/jamanetworkopen.2019.20740
Desmarais P, Weidman D, Wassef A, Bruneau M-A, Friedland J, Bajsarowicz P, et al. The interplay between post-traumatic stress disorder and dementia: a systematic review. Am J Geriatric Psychiatry. 2020;28(1):48–60.
doi: 10.1016/j.jagp.2019.08.006
Dallam DL, Mellman TA, Bhatnagar A, Nguyen S, Kurukumbi M. Trauma reenactments in aging veterans with dementia. J Am Geriatr Soc. 2011;59(4):766–8.
pubmed: 21492111
pmcid: 3906720
doi: 10.1111/j.1532-5415.2011.03344.x
Martinez-Clavera C, James S, Bowditch E, Kuruvilla T. Delayed-onset post-traumatic stress disorder symptoms in dementia. Progress Neurol Psychiatry. 2017;21(3):26–31.
doi: 10.1002/pnp.477
Craftman ÅG, Swall A, Båkman K, Grundberg Å, Hagelin CL. Caring for older people with dementia reliving past trauma. Nurs Ethics. 2019;27(2):621–33.
pubmed: 31462155
doi: 10.1177/0969733019864152
Guest G, Bunce A, Johnson L. How many interviews are enough? An experiment with data saturation and variability. Field Methods. 2006;18(1):59–82.
doi: 10.1177/1525822X05279903
Namey E, Guest G, McKenna K, Chen M. Evaluating bang for the buck: a cost-effectiveness comparison between individual interviews and focus groups based on thematic saturation levels. Am J Evaluation. 2016;37(3):425–40.
doi: 10.1177/1098214016630406
Guest G, Namey E, Chen M. A simple method to assess and report thematic saturation in qualitative research. PLoS ONE. 2020;15(5):e0232076.
pubmed: 32369511
pmcid: 7200005
doi: 10.1371/journal.pone.0232076