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Assessing Culturally Tailored Dementia Interventions to Support Informal Caregivers of People Living with Dementia (PLWD): A Scoping Review

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Abstract

The review aimed to identify and describe dementia care interventions and programs that are culturally tailored to support racial and ethnic minority informal caregivers of community-dwelling people living with dementia (PLWD) to identify gaps in need. Culturally targeted interventions to support vulnerable minority informal caregivers are important in addressing the care needs of PLWD and eliminating racial and ethnic dementia disparities. Nevertheless, little is known about the existing interventions and programs that are culturally tailored to support racial and ethnic minority groups, in particular, African-American caregivers in the care of their family members. We conducted a Scoping review, searching eight databases including MEDLINE, EMBASE, APA PsycINFO, CINAHL, PUBMED, Scopus, and Web of Science between January 2012 and June 2022. Our search identified 2669 records, of which 17 articles were included in the analysis. The review addressed how these interventions have been developed to meet the needs and preferences of minority caregivers, particularly, African-American caregivers in culturally responsive ways. Findings show that culturally tailored interventions have the potential to improve the caregiving ability of informal caregivers. Supporting informal caregivers appears to be an effective strategy often improving the well-being of PLWD and reducing caregiver burden. The review demonstrates the paucity and diversity of research on culturally tailored dementia interventions to reduce racial and ethnic disparities. This scoping review identified gaps in the existing literature and aims for future work to develop and investigate cultural tailoring of interventions.

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References

  1. 2021 Alzheimer's disease facts and figures. Alzheimers Dement. 2021;17(3):327–406. https://doi.org/10.1002/alz.12328.

  2. 2022 Alzheimer's disease facts and figures. Alzheimers Dement. 2022;18(4):700–89. https://doi.org/10.1002/alz.12638.

  3. What is Alzheimer’s Disease? | CDC. 2022. https://www.cdc.gov/aging/aginginfo/alzheimers.htm.

  4. Alzheimer’s Association. Alzheimer’s disease facts and figures. Alzheimers Dement 2019;15(3):321–87.

  5. Skufca, L. AARP family caregiving survey: Caregivers’ reflections on changing roles. AARP Research. 2017;10.

  6. 2020 Alzheimer's disease facts and figures. Alzheimers Dement. 2020. https://doi.org/10.1002/alz.12068.

  7. Gallagher-Thompson D, Haley W, Guy D, Rupert M, Argüelles T, Zeiss LM, Long C, Tennstedt S, Ory M. Tailoring psychological interventions for ethnically diverse dementia caregivers. Clin Psychol: Sci Pract. 2003;10:423–38. https://doi.org/10.1093/clipsy.bpg042.

  8. Cooper C, Tandy AR, Balamurali TB, Livingston G. A systematic review and meta-analysis of ethnic differences in use of dementia treatment, care, and research. Am J Geriatr Psychiatry. 2010;18(3):193–203.

    Article  PubMed  Google Scholar 

  9. Babulal GM, Quiroz YT, Albensi BC, Arenaza-Urquijo E, Astell AJ, Babiloni C, Bahar-Fuchs A, Bell J, Bowman GL, Brickman AM, Chételat G, Ciro C, Cohen AD, Dilworth-Anderson P, Dodge HH, Dreux S, Edland S, Esbensen A, Evered L, Ewers M., … International Society to Advance Alzheimer’s Research and Treatment, Alzheimer’s Association. Perspectives on ethnic and racial disparities in Alzheimer’s disease and related dementias: update and areas of immediate need. Alzheimers Dement : J Alzheimers Assoc. 2019;15(2):292–12. https://doi.org/10.1016/j.jalz.2018.09.009

  10. Fabius CD, Wolff JL, Kasper JD. Race differences in characteristics and experiences of black and white caregivers of older Americans. Gerontologist. 2020;60(7):1244–53.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Rainville C, Skufca L, Mehegan L. Family caregiving and out-of-pocket costs: 2016 report. African American RP Public Policy Institute; 2016.

    Google Scholar 

  12. Hughes TB, Black BS, Albert M, Gitlin LN, Johnson DM, Lyketsos CG, Samus QM. Correlates of objective and subjective measures of caregiver burden among dementia caregivers: influence of unmet patient and caregiver dementia-related care needs. Int Psychogeriatr. 2014;26(11):1875–83. https://doi.org/10.1017/S1041610214001240.

    Article  PubMed  PubMed Central  Google Scholar 

  13. Darnell KR, McGuire C, Danner DD. African American participation in Alzheimer’s disease research that includes brain donation. Am J Alzheimers Dis Dement®. 2011;26(6):469–76.

    Article  Google Scholar 

  14. Armstrong TD, Crum LD, Rieger RH, Bennett TA, Edwards LJ. Attitudes of African Americans toward participation in medical research. J Appl Soc Psychol. 1999;29(3):552–74.

    Article  Google Scholar 

  15. Portacolone E, Palmer NR, Lichtenberg P, Waters CM, Hill CV, Keiser S, Vest L, Maloof M, Tran T, Martinez P, Guerrero J, Johnson JK. Earning the trust of African American communities to increase representation in dementia research. Ethn Dis. 2020;30(Suppl 2):719–34. https://doi.org/10.18865/ed.30.S2.719.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Dimtsu Assfaw, A., Reinschmidt, K. M., Teasdale, T. A., Stephens, L., Kleszynski, K. L., & Dwyer, K. Describing providers' perspectives on the needs and challenges of family caregivers of African American people living with dementia. Home Health Care Serv Q. 2023;1–21. https://doi.org/10.1080/01621424.2023.2299486.

  17. McCarron HR, Wright A, Moone RP, Toomey T, Osypuk TL, Shippee T. Assets and unmet needs of diverse older adults: Perspectives of community-based service providers in Minnesota. J Health Disparities Res Pract. 2020;13(1):6.

    Google Scholar 

  18. Barnes LL. Alzheimer disease in African American individuals: increased incidence or not enough data? Nat Rev Neurol. 2022;18(1):56–62. https://doi.org/10.1038/s41582-021-00589-3.

    Article  PubMed  Google Scholar 

  19. Burgdorf JG, Amjad H. Impact of diagnosed (vs undiagnosed) dementia on family caregiving experiences. J Am Geriatr Soc. 2023;71(4):1236–42. https://doi.org/10.1111/jgs.18155.

    Article  PubMed  Google Scholar 

  20. Lathren CR, Sloane PD, Hoyle JD, Zimmerman S, Kaufer DI. Improving dementia diagnosis and management in primary care: a cohort study of the impact of a training and support program on physician competency, practice patterns, and community linkages. BMC Geriatr. 2013;13(1):1–7.

    Article  Google Scholar 

  21. Byers MD, Resciniti NV, Ureña S, Leith K, Brown MJ, Lampe NM, Friedman DB. An evaluation of Dementia Dialogues®: a program for informal and formal caregivers in North and South Carolina. J Appl Gerontol. 2022;41(1):82–91.

    Article  PubMed  Google Scholar 

  22. Glueckauf RL. Telephone-mediated, faith-based cognitive-behavioral intervention for depressed African-American dementia caregivers [Paper presentation]. Annual Meeting, American Psychological Association, Toronto, Canada; 2015.

    Google Scholar 

  23. Glueckauf RL, Davis WS, Allen K, Chipi P, Schettini G, Tegen L, Jian X, Gustafson DJ, Maze J, Mosser B, Prescott S, Robinson F, Short C, Ticket S, VanMatre J, DiGeronimo T, Ramirez C. Integrative cognitive-behavioral and spiritual counseling for rural dementia caregivers with depression. Rehabil Psychol. 2009;54(4):449–61.

    Article  PubMed  Google Scholar 

  24. Lampe NM, Desai N, Norton-Brown T, Nowakowski AC, Glueckauf RL. African-American lay pastoral care facilitators’ perspectives on dementia caregiver education and training. Qual Rep. 2022;27(2):324–39.

    Google Scholar 

  25. Joo JY. Effectiveness of culturally tailored diabetes interventions for Asian immigrants to the United States: a systematic review. Diabetes Educ. 2014;40(5):605–15.

    Article  PubMed  Google Scholar 

  26. Brijnath B, Croy S, Sabates J, Thodis A, Ellis S, de Crespigny F, Moxey A, Day R, Dobson A, Elliott C, Etherington C, Geronimo MA, Hlis D, Lampit A, Low LF, Straiton N, Temple J. Including ethnic minorities in dementia research: Recommendations from a scoping review. Alzheimers Dement (N Y). 2022;8(1):e12222. https://doi.org/10.1002/trc2.12222.

  27. Peters MDJ, Godfrey C, McInerney P, Khalil H, Larsen P, Marnie C, Pollock D, Tricco AC, Munn Z. Best practice guidance and reporting items for the development of scoping review protocols. JBI Evid Synth. 2022;20(4):953–68. https://doi.org/10.11124/JBIES-21-00242.

  28. Arksey H, O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8(1):19–32.

    Article  Google Scholar 

  29. Le CT, Lee JA. Home visit based mindfulness intervention for Vietnamese American dementia family caregivers: a pilot feasibility study. Asia Pac Island Nurs J. 2021;5(4):207.

    Article  Google Scholar 

  30. Bergeron CD, Robinson MT, Willis FB, Albertie ML, Wainwright JD, Fudge MR, Parfitt FC, Crook JE, Ball CT, Lucas JA. Testing an Alzheimer's disease educational approach in two African American neighborhoods in Florida. J Racial Ethn Health Disparities. 2022;9(6):2283–90. https://doi.org/10.1007/s40615-021-01165-7.

  31. Goeman D, King J, Koch S. Development of a model of dementia support and pathway for culturally and linguistically diverse communities using co-creation and participatory action research. BMJ Open. 2016;6(12):e013064.

    Article  PubMed  PubMed Central  Google Scholar 

  32. Lee JA, Nguyen H, Park J, Tran L, Nguyen T, Huynh Y. Usages of computers and smartphones to develop dementia care education program for Asian American family caregivers. Healthc Informat Res. 2017;23(4):338–42.

    Article  Google Scholar 

  33. Han HR, Choi S, Wang J, Lee HB. Pilot testing of a dementia literacy intervention for Korean American elders with dementia and their caregivers. J Clin Transl Res. 2021;7(6):712.

    PubMed  PubMed Central  Google Scholar 

  34. Chua J, Pachana NA. Use of a psychoeducational skill training DVD program to reduce stress in Chinese Australian and Singaporean dementia caregivers: a pilot study. Clin Gerontol. 2016;39(1):3–14.

    Article  Google Scholar 

  35. Browne CV, Muneoka S, Ka'opua LS, Wu YY, Burrage RL, Lee YJ, Mokuau NK, Braun KL. Developing a culturally responsive dementia storybook with Native Hawaiian youth. Gerontol Geriatr Educ. 2022;43(3):315–27. https://doi.org/10.1080/02701960.2021.1885398.

  36. Chi I, Liu M, Wang S. Developing the Asian Pacific islander caregiver train-the-trainer program in the United States. J Ethn Cult Divers Soc Work. 2020;29(6):490–507.

    Article  Google Scholar 

  37. Lincoln KD, Chow TW, Gaines BF. BrainWorks: a comparative effectiveness trial to examine Alzheimer’s disease education for community-dwelling African Americans. Am J Geriatr Psychiatry. 2019;27(1):53–61.

    Article  PubMed  Google Scholar 

  38. Wang Y, Xiao LD, Yu Y, Huang R, You H, Liu M. An individualized telephone-based care support program for rural family caregivers of people with dementia: study protocol for a cluster randomized controlled trial. BMC Geriatr. 2021;21(1):1–11.

    Article  Google Scholar 

  39. Dunn DJ, Schwartz A, Teufel-Shone NI, Meyer LA. Educational program to promote resilience for caregivers, family members, and community members in the care of elderly Native Americans who are experiencing memory loss and cognitive decline. Visions: J Rogerian Nurs Sci. 2019;25(2).

  40. Epps F, Moore M, Chester M, Gore J, Sainz M, Adkins A, Clevenger C, Aycock D. The Alter program: a nurse-led, dementia-friendly program for African American faith communities and families living with dementia. Nurs Adm Q. 2022;46(1):72–80. https://doi.org/10.1097/NAQ.0000000000000506.

  41. Richardson RC, Sistler AB. The well-being of elderly black caregivers and noncaregivers: a preliminary study. J Gerontol Soc Work. 1999;31(1–2):109–17.

    Article  Google Scholar 

  42. Lampe NM, Desai N, Norton-Brown T, Nowakowski AC, Glueckauf RL. African American lay pastoral care facilitators’ perspectives on dementia caregiver education and training. Qual Rep. 2022;27(2):324–39.

    Google Scholar 

  43. Czaja SJ, Lee CC, Perdomo D, Loewenstein D, Bravo M, Moxley PhD, J. H., & Schulz, R. Community REACH: an implementation of an evidence-based caregiver program. Gerontologist. 2018;58(2):e130–7.

    Article  PubMed  Google Scholar 

  44. Levy-Storms L, Cherry DL, Lee LJ, Wolf SM. Reducing safety risk among underserved caregivers with an Alzheimer’s home safety program. Aging Ment Health. 2017;21(9):902–9.

    Article  PubMed  Google Scholar 

  45. Napoles AM, Chadiha L, Eversley R, Moreno-John G. Reviews: developing culturally sensitive dementia caregiver interventions: are we there yet? Am J Alzheimers Dis Dement. 2010;25(5):389–406.

    Article  Google Scholar 

  46. Jones I. Social class, dementia and the fourth age. Sociol Health Illn. 2017;39(2):303–17.

    Article  PubMed  Google Scholar 

  47. Sidani S, Ibrahim S, Lok J, Fan L, Fox M, Guruge S. An integrated strategy for the cultural adaptation of evidence-based interventions. Health. 2017;9(04):738.

    Article  Google Scholar 

  48. Berwald S, Roche M, Adelman S, Mukadam N, Livingston G. Black African and Caribbean British Communities’ perceptions of memory problems: “We don’t do dementia.” PloS one. 2016;11(4):e0151878.

    Article  PubMed  PubMed Central  Google Scholar 

  49. Lynch CP, Williams JS, J Ruggiero K, G Knapp R, Egede LE. Tablet-aided behavioral intervention effect on self-management skills (TABLETS) for diabetes. Trials. 2016;17:157. https://doi.org/10.1186/s13063-016-1243-2.

  50. Chandler J, Sox L, Kellam K, Feder L, Nemeth L, Treiber F. Impact of a culturally tailored mHealth medication regimen self-management program upon blood pressure among hypertensive Hispanic adults. Int J Environ Res Public Health. 2019;16(7):1226.

    Article  PubMed  PubMed Central  Google Scholar 

  51. Joseph RP, Keller C, Adams MA, Ainsworth BE. Print versus a culturally-relevant Facebook and text message delivered intervention to promote physical activity in African American women: a randomized pilot trial. BMC Womens Health. 2015;15(1):1–18.

    Article  Google Scholar 

  52. Lucero RJ, Fehlberg EA, Patel AGM, Bjarnardottir RI, Williams R, Lee K, Ansell M, Bakken S, Luchsinger JA, Mittelman M. The effects of information and communication technologies on informal caregivers of persons living with dementia: a systematic review. Alzheimers Dement (N Y). 2018;5:1–12. https://doi.org/10.1016/j.trci.2018.11.003.PMC6315277.

  53. Adewuya AO, Momodu O, Olibamoyo O, Adegbaju A, Adesoji O, Adegbokun A. The effectiveness and acceptability of mobile telephone adherence support for management of depression in the Mental Health in Primary Care (MeHPriC) project, Lagos, Nigeria: a pilot cluster randomised controlled trial. J Affect Disord. 2019;253:118–25.

    Article  PubMed  Google Scholar 

  54. Epps F, Alexander K, Brewster GS, Parker LJ, Chester M, Tomlinson A, Adkins A, Zingg S, Thornton J. Promoting dementia awareness in African‐American faith communities. Publ Health Nurs. 2020;37(5):715–21. https://doi.org/10.1111/phn.12759.

  55. Epps F, Foster K, Alexander K, Brewster G, Chester M, Thornton J, Aycock D. Perceptions and attitudes toward dementia in predominantly African American congregants. J Appl Gerontol. 2021;40(11):1511–16. https://doi.org/10.1177/0733464820987350.

  56. Su D, Garg A, Wiens J, Meyer E, Cai G. Assessing health needs in African American churches: a mixed methods study. J Relig Health. 2021;60(2):1179–97.

    Article  PubMed  Google Scholar 

  57. Williams LF, Cousin L. “A charge to keep I have”: black pastors’ perceptions of their influence on health behaviors and outcomes in their churches and communities. J Relig Health. 2021;60(2):1069–82.

    Article  PubMed  Google Scholar 

  58. James T, Mukadam N, Sommerlad A, Ceballos SG, Livingston G. Culturally tailored therapeutic interventions for people affected by dementia: a systematic review and new conceptual model. Lancet Healthy Longev. 2021;2(3):e171–9.

    Article  PubMed  Google Scholar 

  59. Abramson CM, Hashemi M, Sánchez-Jankowski M. Perceived discrimination in US healthcare: charting the effects of key social characteristics within and across racial groups. Prev Med Rep. 2015;2:615–21.

    Article  PubMed  PubMed Central  Google Scholar 

  60. McDaniel M, Richardson A, Gonzalez D, Caraveo CA, Wagner L, Skopec L. Black and African American adults’ perspectives on discrimination and unfair judgment in health care. Washington, DC: Urban Institute; 2021.

    Google Scholar 

  61. Kennedy BR, Mathis CC, Woods AK. African Americans and their distrust of the health care system: healthcare for diverse populations. J Cultural Divers. 2007;14(2), 56–60.

  62. Hammonds EM, Reverby SM. Toward a historically informed analysis of racial health disparities since 1619. Am J Public Health. 2019;109(10):1348–9.

    Article  PubMed  PubMed Central  Google Scholar 

  63. Jones C, Jablonski RA. “I don’t want to be a guinea pig”: recruiting older African Americans. J Gerontol Nurs. 2014;40(3):3–4.

    Article  PubMed  PubMed Central  Google Scholar 

  64. Joo JY, Liu MF. Culturally tailored interventions for ethnic minorities: a scoping review. Nurs Open. 2021;8(5):2078–90. https://doi.org/10.1002/nop2.733.

    Article  PubMed  Google Scholar 

  65. Joyce KE, Cartwright N. Bridging the gap between research and practice: predicting what will work locally. Am Educ Res J. 2020;57(3):1045–82.

    Article  Google Scholar 

  66. Wallerstein N, Oetzel JG, Duran B, Magarati M, Pearson C, Belone L, Davis J, DeWindt L, Kastelic S, Lucero J, Ruddock C, Sutter E, Dutta MJ. Culture-centeredness in community-based participatory research: contributions to health education intervention research. Health Educ Res. 2019;34(4):372–88. https://doi.org/10.1093/her/cyz021.

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Acknowledgements

The author would like to thank Sheryl Lynn Hamilton of the University of Oklahoma Health Sciences Center Robert M Bird Health Sciences Library for her assistance in the search strategy process.

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Authors and Affiliations

  1. Department of Neurology- Knight Alzheimer Disease Research Center, Washington University in St. Louis, St. Louis, MO, USA

    Araya Dimtsu Assfaw

  2. Hudson College of Public Health, University of Oklahoma Health Sciences Center, Oklahoma City, OK, USA

    Kerstin M. Reinschmidt & Thomas A. Teasdale

  3. Hudson College of Public Health & Oklahoma Shared Clinical and Translational Research Center, University of Oklahoma Health Sciences Center, Oklahoma City, OK, USA

    Lancer Stephens

  4. Department of Medicine, University of Oklahoma Health Sciences Center, Oklahoma City, OK, USA

    Keith L. Kleszynski

  5. Fran and Earl Ziegler College of Nursing, University of Oklahoma Health Sciences Center, Oklahoma City, OK, USA

    Kathleen Dwyer

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The first author, Araya Dimtsu Assfaw, performed material preparation, data collection, and analysis. All authors commented on the previous version of the manuscript. All authors read and approved the final manuscript.

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Table 1 Summary of Reviewed Studies
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Assfaw, A.D., Reinschmidt, K.M., Teasdale, T.A. et al. Assessing Culturally Tailored Dementia Interventions to Support Informal Caregivers of People Living with Dementia (PLWD): A Scoping Review. J. Racial and Ethnic Health Disparities (2024). https://doi.org/10.1007/s40615-024-01985-3

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