348
Views
0
CrossRef citations to date
0
Altmetric
Caregiving

‘It’s a lonely journey’: caregiving experiences and psychosocial distress among Chinese American dementia family caregivers

, , , , &
Pages 466-472 | Received 30 Jun 2023, Accepted 10 Nov 2023, Published online: 01 Dec 2023

References

  • Allen, A. P., Curran, E. A., Duggan, Á., Cryan, J. F., Chorcoráin, A. N., Dinan, T. G., Molloy, D. W., Kearney, P. M., & Clarke, G. (2017). A systematic review of the psychobiological burden of informal caregiving for patients with dementia: Focus on cognitive and biological markers of chronic stress. Neuroscience and Biobehavioral Reviews, 73, 123–164. https://doi.org/10.1016/j.neubiorev.2016.12.006
  • Alzheimer’s Association. (2021). Alzheimer’s disease facts and figures. Alzheimers Dement, 17(3), 327–406. https://doi.org/10.1002/alz.12328
  • Alzheimer’s Association. (2023). 2023 Alzheimer’s Disease Facts and Figures https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf
  • Bramble, M., Moyle, W., & McAllister, M. (2009). Seeking connection: Family care experiences following long-term dementia care placement. Journal of Clinical Nursing, 18(22), 3118–3125. https://doi.org/10.1111/j.1365-2702.2009.02878.x
  • Brooke, J., Cronin, C., Stiell, M., & Ojo, O. (2018). The intersection of culture in the provision of dementia care: A systematic review. Journal of Clinical Nursing, 27(17–18), 3241–3253. https://doi.org/10.1111/jocn.13999
  • Dai, B., Mao, Z., Wu, B., Mei, Y. J., Levkoff, S., & Wang, H. (2015). Family caregiver’s perception of Alzheimer’s disease and caregiving in Chinese culture. Social Work in Public Health, 30(2), 185–196. https://doi.org/10.1080/19371918.2014.969858
  • Daker-White, G., Beattie, A., Gilliard, J., & Means, R. (2002). Minority ethnic groups in dementia care: A review of service needs, service provision and models of good practice. Aging & Mental Health, 6(2), 101–108. https://doi.org/10.1080/13607860220126835
  • Dam, A. E., de Vugt, M. E., Klinkenberg, I. P., Verhey, F. R., & van Boxtel, M. P. (2016). A systematic review of social support interventions for caregivers of people with dementia: Are they doing what they promise? Maturitas, 85, 117–130. https://doi.org/10.1016/j.maturitas.2015.12.008
  • Farina, N., Page, T. E., Daley, S., Brown, A., Bowling, A., Basset, T., Livingston, G., Knapp, M., Murray, J., & Banerjee, S. (2017). Factors associated with the quality of life of family carers of people with dementia: A systematic review. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, 13(5), 572–581. https://doi.org/10.1016/j.jalz.2016.12.010
  • Fonareva, I., & Oken, B. S. (2014). Physiological and functional consequences of caregiving for relatives with dementia. International Psychogeriatrics, 26(5), 725–747. https://doi.org/10.1017/S1041610214000039
  • Harmell, A. L., Chattillion, E. A., Roepke, S. K., & Mausbach, B. T. (2011). A review of the psychobiology of dementia caregiving: A focus on resilience factors. Current Psychiatry Reports, 13(3), 219–224. https://doi.org/10.1007/s11920-011-0187-1
  • Holland, J. M., Thompson, L. W., Tzuang, M., & Gallagher-Thompson, D. (2010). Psychosocial factors among Chinese American women dementia caregivers and their association with salivary cortisol: Results of an exploratory study. Ageing International, 35(2), 109–127. https://doi.org/10.1007/s12126-010-9057-0
  • Hong, Y. A., Shen, K., Han, H.-R., Park, V. T., Bagchi, P., Lu, H. K., Chen, H., & Wang, J. H-y (2023). A WeChat-based Intervention, wellness enhancement for caregivers (WECARE), for Chinese American dementia caregivers: Pilot assessment of feasibility, acceptability, and preliminary efficacy. JMIR Aging, 6(1), e42972. https://doi.org/10.2196/42972
  • Hong, Y. A., Shen, K., Lu, H. K., Chen, H., Gong, Y., Park, V. T., & Han, H.-R. (2022). A social media–based intervention for Chinese American caregivers of persons with dementia: Protocol development. JMIR Aging, 5(3), e40171. https://doi.org/10.2196/40171
  • Hu, M., Ma, C., Sadarangani, T., & Wu, B. (2021). Social-behavioral Interventions for Asian and Hispanic American dementia caregivers: An integrative review. Aging and Health Research, 1(3), 100027. https://doi.org/10.1016/j.ahr.2021.100027
  • Jang, Y., & Kim, M. T. (2019). Limited English proficiency and health service use in Asian Americans. Journal of Immigrant and Minority Health, 21(2), 264–270. https://doi.org/10.1007/s10903-018-0763-0
  • Joffe, H., & Yardley, L. (2004). Content and thematic analysis. Research Methods for Clinical and Health Psychology, 56, 68.
  • Judge, K. S., Menne, H. L., & Whitlatch, C. J. (2010). Stress process model for individuals with dementia. The Gerontologist, 50(3), 294–302. https://doi.org/10.1093/geront/gnp162
  • Jütten, L. H., Mark, R. E., Wicherts, J. M., & Sitskoorn, M. M. (2018). The effectiveness of psychosocial and behavioral interventions for informal dementia caregivers: Meta-analyses and meta-regressions. Journal of Alzheimer’s Disease: JAD, 66(1), 149–172. https://doi.org/10.3233/JAD-180508
  • Kenning, C., Daker-White, G., Blakemore, A., Panagioti, M., & Waheed, W. (2017). Barriers and facilitators in accessing dementia care by ethnic minority groups: A meta-synthesis of qualitative studies. BMC Psychiatry, 17(1), 316. https://doi.org/10.1186/s12888-017-1474-0
  • Lai, D. W. (2010). Filial piety, caregiving appraisal, and caregiving burden. Research on Aging, 32(2), 200–223. https://doi.org/10.1177/0164027509351475
  • Liu, D., Hinton, L., Tran, C., Hinton, D., & Barker, J. C. (2008). Reexamining the relationships among dementia, stigma, and aging in immigrant Chinese and Vietnamese family caregivers. Journal of Cross-Cultural Gerontology, 23(3), 283–299. https://doi.org/10.1007/s10823-008-9075-5
  • Liu, J., Lou, Y., Wu, B., & Mui, A. C. Y.-S. (2021). “I’ve been always strong to conquer any suffering:” challenges and resilience of Chinese American dementia caregivers in a life course perspective. Aging & Mental Health, 25(9), 1716–1724. https://doi.org/10.1080/13607863.2020.1793900
  • Liu, J., Wu, B., & Dong, X. (2020). Psychological well-being of Chinese Immigrant adult-child caregivers: How do filial expectation, self-rated filial performance, and filial discrepancy matter? Aging & Mental Health, 24(3), 489–496. https://doi.org/10.1080/13607863.2018.1544210
  • Ma, K. P. K., & Saw, A. (2020). An international systematic review of dementia caregiving interventions for Chinese families. International Journal of Geriatric Psychiatry, 35(11), 1263–1284. https://doi.org/10.1002/gps.5400
  • Meyer, O. L., Nguyen, K. H., Dao, T. N., Vu, P., Arean, P., & Hinton, L. (2015). The sociocultural context of caregiving experiences for Vietnamese dementia family caregivers. Asian American Journal of Psychology, 6(3), 263–272. https://doi.org/10.1037/aap0000024
  • Monin, J. K., Schulz, R., & Feeney, B. C. (2015). Compassionate love in individuals with Alzheimer’s disease and their spousal caregivers: Associations with caregivers’ psychological health. The Gerontologist, 55(6), 981–989. https://doi.org/10.1093/geront/gnu001
  • Oliveira, D., Zarit, S. H., & Orrell, M. (2019). Health-promoting self-care in family caregivers of people with dementia: The views of multiple stakeholders. The Gerontologist, 59(5), e501–e511. https://doi.org/10.1093/geront/gnz029
  • Ornstein, K., & Gaugler, J. E. (2012). The problem with “problem behaviors”: A systematic review of the association between individual patient behavioral and psychological symptoms and caregiver depression and burden within the dementia patient–caregiver dyad. International Psychogeriatrics, 24(10), 1536–1552. https://doi.org/10.1017/S1041610212000737
  • Pew Research Center. (2021). Asian Americans are the fastest-growing racial or ethnic group in the U.S. www. pewresearch.org/fact-tank/2021/04/09/asian-americans-are-the-fastest-growingracial-or-ethnic-group-in-the-u-s/
  • Pinquart, M., & Sörensen, S. (2011). Spouses, adult children, and children-in-law as caregivers of older adults: A meta-analytic comparison. Psychology and Aging, 26(1), 1–14. https://doi.org/10.1037/a0021863
  • Robinson, K. M., Buckwalter, K., & Reed, D. (2013). Differences between dementia caregivers who are users and nonusers of community services. Public Health Nursing (Boston, Mass.), 30(6), 501–510. https://doi.org/10.1111/phn.12041
  • Rote, S. M., Angel, J. L., Moon, H., & Markides, K. (2019). Caregiving across diverse populations: New evidence from the national study of caregiving and Hispanic EPESE. Innovation in Aging, 3(2), igz033. https://doi.org/10.1093/geroni/igz033
  • Rote, S. M., & Moon, H. (2018). Racial/ethnic differences in caregiving frequency: Does immigrant status matter? The Journals of Gerontology: Series B, 73(6), 1088–1098.
  • Ryan, G. W., & Bernard, H. R. (2003). Techniques to identify themes. Field Methods, 15(1), 85–109. https://doi.org/10.1177/1525822X02239569
  • Sallim, A. B., Sayampanathan, A. A., Cuttilan, A., & Ho, R. C.-M. (2015). Prevalence of mental health disorders among caregivers of patients with Alzheimer disease. Journal of the American Medical Directors Association, 16(12), 1034–1041. https://doi.org/10.1016/j.jamda.2015.09.007
  • Schulz, R., & Martire, L. M. (2004). Family caregiving of persons with dementia: Prevalence, health effects, and support strategies. The American Journal of Geriatric Psychiatry, 12(3), 240–249. https://doi.org/10.1097/00019442-200405000-00002
  • Sheehan, O. C., Haley, W. E., Howard, V. J., Huang, J., Rhodes, J. D., & Roth, D. L. (2021). Stress, burden, and well-being in dementia and nondementia caregivers: Insights from the caregiving transitions study. The Gerontologist, 61(5), 670–679. https://doi.org/10.1093/geront/gnaa108
  • Sun, F., Mutlu, A., & Coon, D. (2014). Service barriers faced by Chinese American families with a dementia relative: Perspectives from family caregivers and service professionals. Clinical Gerontologist, 37(2), 120–138. https://doi.org/10.1080/07317115.2013.868848
  • Sun, F., Ong, R., & Burnette, D. (2012). The influence of ethnicity and culture on dementia caregiving: A review of empirical studies on Chinese Americans. American Journal of Alzheimer’s Disease and Other Dementias, ®, 27(1), 13–22. https://doi.org/10.1177/1533317512438224
  • Ta Park, V. M., Ton, V., Yeo, G., Tiet, Q. Q., Vuong, Q., & Gallagher-Thompson, D. (2019). Vietnamese American dementia caregivers’ perceptions and experiences of a culturally tailored, evidence-based program to reduce stress and depression. Journal of Gerontological Nursing, 45(9), 39–50. https://doi.org/10.3928/00989134-20190813-05
  • van den Kieboom, R., Snaphaan, L., Mark, R., & Bongers, I. (2020). The trajectory of caregiver burden and risk factors in dementia progression: A systematic review. Journal of Alzheimer’s Disease: JAD, 77(3), 1107–1115. https://doi.org/10.3233/JAD-200647
  • Waligora, K. J., Bahouth, M. N., & Han, H.-R. (2019). The self-care needs and behaviors of dementia informal caregivers: a systematic review. The Gerontologist, 59(5), e565–e583. https://doi.org/10.1093/geront/gny076
  • Zhan, L. (2004). Caring for family members with Alzheimer’s disease: Perspectives from Chinese American caregivers. SLACK Incorporated Thorofare.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.