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Journal of Cross-Cultural Gerontology

, Volume 31, Issue 2, pp 157–172 | Cite as

Lived Experience of Caregivers of Persons with Dementia and the Impact on their Sense of Self: A Qualitative Study in Singapore

  • Jane Tuomola
  • Jiaying Soon
  • Paul Fisher
  • Philip Yap
ORIGINAL ARTICLE

Abstract

The prevalence of dementia is increasing, especially in Asia. Caregivers of people with dementia are at greater risk of psychological morbidity; however, most studies on caregiving have been conducted in Western populations. As a caregiver’s experience can be influenced by cultural factors, this needs exploring further. This study explored the lived experience of caregivers of dementia patients in Singapore and the impact of caring on their sense of self. Six Chinese female spousal caregivers were interviewed and their experiences were analyzed using interpretative phenomenological analysis (IPA). Four super-ordinate themes were identified: impact of caregiving, acceptance of destiny, taking control, and view of self. The findings reflected the influence of Confucian values. Clinical implications are discussed, including more culturally sensitive services.

Keywords

Caregiver Culture Dementia Interpretative phenomenological analysis 

References

  1. Adams, K. B. (2008). Specific effects of caring for a spouse with dementia: differences in depressive symptoms between caregiver and non-caregiver spouses. International Psychogeriatrics, 20(3), 508–520. doi: 10.1017/S1041610207006278.CrossRefGoogle Scholar
  2. Adams, K. B., McClendon, M. J., & Smyth, K. A. (2008). Personal losses and relationship quality in dementia caregiving. Dementia, 7(30), 301–319. doi: 10.1177/1471301208093286.CrossRefGoogle Scholar
  3. Aguglia, E., Onor, M. L., Trevisiol, M., Negro, C., Saina, M., & Maso, E. (2004). Stress in the caregivers of Alzheimer’s patients: An experimental investigation in Italy. American Journal of Alzheimer's Disease and Other Dementias, 19(4), 248–252. doi: 10.1177/153331750401900403.CrossRefGoogle Scholar
  4. Alzheimer’s Disease International (2006). Dementia in the Asia Pacific region: The epidemic is here. Retrieved from http://www.alz.org.sg/about-dementia/statistics
  5. Alzheimer’s Disease International (2014). Dementia in the Asia Pacific region. London: Alzheimer’s Disease International. Retrieved from https://www.alz.co.uk/adi/pdf/Dementia-Asia-Pacific-2014.pdf.
  6. Au, A., Lau, K. M., Koo, S., Cheung, G., Pan, P. C., & Wong, M. K. (2009). The effects of informal social support on depressive symptoms and life satisfaction in dementia caregivers in Hong Kong. Hong Kong Journal of Psychiatry, 19(2), 57–64. doi: 10.1080/13607860902918223.Google Scholar
  7. Bédard, M., Pedlar, D., Martin, N. J., Malott, O., & Stones, M. J. (2000). Burden in caregivers of cognitively impaired older adults living in the community: methodological issues and determinants. International Psychogeriatrics, 12(3), 307–332. doi: 10.1017/S1041610200006426.CrossRefGoogle Scholar
  8. Bowlby (1980). Attachment and loss: Vol III. Loss: Sadness and depression. London: Hogarth Press.Google Scholar
  9. Bramley, N. & Eatough, V. (2005). The experience of living with Parkinson’s disease: An interpretative phenomenological analysis case study. Psychology & Health, 20, 223–235.CrossRefGoogle Scholar
  10. Brooker, D. (2003). What is person-centred care in dementia? Reviews in Clinical Gerontology, 13(3), 215–222. doi: 10.1017/S095925980400108X.CrossRefGoogle Scholar
  11. Chan, S. W. C. (2010). Family caregiving in dementia: the Asian perspective of a global problem. Dementia and Geriatric Cognitive Disorders, 30(6), 469–478. doi: 10.1159/000322086.CrossRefGoogle Scholar
  12. Chan, W. C., Ng, C., Mok, C. C. M., Wong, F. L. F., Pang, S. L., & Chiu, H. F. K. (2010). Lived experience of caregivers of persons with dementia in Hong Kong: A qualitative study. East Asian Archives of Psychiatry, 20(4), 163–168. Retrieved from: http://easap.asia/journal_file/1004_V20N4_p163.pdf
  13. Chee, Y. K. & Levkoff, S. E. (2001). Culture and dementia: accounts by family caregivers and health professionals for dementia-affected elders in South Korea. Journal of Cross-Cultural Gerontology, 16(2), 111–125. doi: 10.1023/A:1010640527713.CrossRefGoogle Scholar
  14. Cheston, R. & Bender, M. (1999). Understanding dementia: The man with the worried eyes. London: Jessica Kingsley Publishers.Google Scholar
  15. Cho, H. (2000). Public opinion as personal cultivation: A normative notion and a source of social control in traditional China. International Journal of Public Opinion Research, 12(3), 299–323. doi: 10.1093/ijpor/12.3.299.CrossRefGoogle Scholar
  16. Choo, W. Y., Low, W. Y., Karina, R., Poi, P. J. H., Ebenezer, E., & Prince, M. J. (2003). Social support and burden among caregivers of patients with dementia in Malaysia. Asia-Pacific Journal of Public Health, 15(23), 23–29. doi: 10.1177/101053950301500105.CrossRefGoogle Scholar
  17. Coen, R. F., O’Boyle, C. A., Coakley, D., & Lawlor, B. A. (2002). Individual quality of life factors distinguishing low-burden and high-burden caregivers of dementia patients. Dementia and Geriatric Cognitive Disorders, 13(3), 164–170. doi: 10.1159/000048648.CrossRefGoogle Scholar
  18. Connell, C. M., Janevic, M. R., & Gallant, M. P. (2001). The costs of caring: impact of dementia on family caregivers. Journal of Geriatric Psychiatry and Neurology, 14(4), 179–187. doi: 10.1177/089198870101400403.CrossRefGoogle Scholar
  19. Cross, S. E., Hardin, E. E., & Gercek-Swing, B. (2011). The what, how, why, and where of self-construal. Personality and Social Psychology Review, 15(2), 142–179. doi: 10.1177/1088868310373752.
  20. Dallos, R. & Vetere, A. (2005). Researching psychotherapy and counselling. New York: Open University Press.Google Scholar
  21. Denzin, N. K. (1995). Discourse analysis. In G. M. Breakwell, S. Hammond, & C. Fife-Schaw (Eds.), Research methods in psychology (pp. 243–258). London: Sage.Google Scholar
  22. Dilworth-Anderson, P. & Gibson, B. E. (2002). The cultural influence of values, norms, meanings, and perceptions in understanding dementia in ethnic minorities. Alzheimer Disease and Associated Disorders, 16, S56–S63. doi: 10.1177/089198870101400403.CrossRefGoogle Scholar
  23. Dilworth-Anderson, P., Williams, I. C., & Gibson, B. E. (2002). Issues of race, ethnicity, and culture in caregiving research: A 20-year review (1980-2000). The Gerontologist, 42(2), 237–272. doi: 10.1093/geront/42.2.237.CrossRefGoogle Scholar
  24. Epp, T. (2003). Person-centred dementia care: A vision to be refined. The Canadian Alzheimers Disease Review, April: 14–18. Retrieved from: http://www.stacommunications.com/customcomm/Back-issue_pages/AD_Review/ad2003e.html
  25. García-Alberca, J., Lara, J., & Luis Berthier, M. (2011). Anxiety and depression in caregivers are associated with patient and caregiver characteristics in Alzheimer’s disease. International Journal of Psychiatry in Medicine, 41(1), 57–69. doi: 10.2190/PM.41.1.f.CrossRefGoogle Scholar
  26. Goode, W. J. (1960). A theory of role strain. American Sociological Review, 25(4), 483–496.CrossRefGoogle Scholar
  27. Goodenough, W. H. (1999). Outline of a framework for a theory of cultural evolution. Cross-Cultural Research: The Journal of Comparative Social Science, 33(1), 84–107. doi: 10.1177/106939719903300106.CrossRefGoogle Scholar
  28. Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough? An experiment with data saturation and variability. Field Methods, 18(1), 59–82.CrossRefGoogle Scholar
  29. Heckhausen, J. & Schulz, R. (1995). A life-span theory of control. Psychological Review, 102(2), 284–304.CrossRefGoogle Scholar
  30. Higgins, E. T. (1987). Self-discrepancy: a theory relating self and affect. Psychological Review, 94(3), 319–340.CrossRefGoogle Scholar
  31. Holroyd, E. (2005). Developing a cultural model of caregiving obligations for elderly chinese wives. Western Journal of Nursing Research, 27(4), 437–456. doi: 10.1177/0193945905274907.CrossRefGoogle Scholar
  32. Hooker, K., Manoogian-O’Dell, M., Monahan, D. J., Frazier, L. D., & Shifren, K. (2000). Does type of disease matter? gender differences among alzheimer’s and parkinson’s disease spouse caregivers. The Gerontologist, 40(5), 568–573. doi: 10.1093/geront/40.5.568.CrossRefGoogle Scholar
  33. Huang, H., Shyu, Y. L., Chen, S., & Hsu, W. (2009). Caregiver self-efficacy for managing behavioural problems of older people with dementia in Taiwan correlates with care receivers’ behavioural problems. Journal of Clinical Nursing, 18(18), 2588–2595. doi: 10.1111/j.1365-2702.2008.02547.x.CrossRefGoogle Scholar
  34. Huang, S., Lee, M., Liao, Y., Wang, W., & Lai, T. (2012). Caregiver burden associated with behavioral and psychological symptoms of dementia (BPSD) in Taiwanese elderly. Archives of Gerontology and Geriatrics, 55(1), 55–59. doi: 10.1016/j.archger.2011.04.009.CrossRefGoogle Scholar
  35. Ikels, C. (1998). The experience of dementia in China. Culture, Medicine and Psychiatry, 22(3), 257–283. doi: 10.1023/A:1005399215185.CrossRefGoogle Scholar
  36. Janevic, M. R. & Connell, C. M. (2001). Racial, ethnic, and cultural differences in the dementia caregiving experience: recent findings. The Gerontologist, 41(3), 334–347. doi: 10.1093/geront/41.3.334.CrossRefGoogle Scholar
  37. Kashima, Y., Yamaguchi, S., Kim, U., Choi, S. C., Gelfand, M. J., & Yuki, M. (1995). Culture, gender, and self: a perspective from individualism-collectivism research. Journal of Personality and Social Psychology, 69(5), 925–937.CrossRefGoogle Scholar
  38. Hurh,W. M., & Kim, K. C. (1990). Adaptation stages and mental health of Korean male immigrants in the United States. International Migration Review, 24(3), 456–479.Google Scholar
  39. Kitwood, T. (1997). Dementia reconsidered: The person comes first. Open University Press: Buckingham.Google Scholar
  40. Kua, E. H. & Tan, S. L. (1997). Stress of caregivers of dementia patients in the Singapore Chinese family. International Journal of Geriatric Psychiatry, 12(4), 466–469. doi: 10.1002/(SICI)1099-1166(199704)12:4<466::AID-GPS517>3.0.CO;2-U.CrossRefGoogle Scholar
  41. Larkin, M., Watts, S., & Clifton, E. (2006). Giving voice and making sense in interpretative phenomenological analysis. Qualitative Research in Psychology, 3(2), 102–120.CrossRefGoogle Scholar
  42. Lawton, M. P., Kleban, M. H., Moss, M., & Rovine, M. (1989). Measuring caregiving appraisal. Journal of Gerontology, 44(3), 61–71.CrossRefGoogle Scholar
  43. Lim, Y. M., Son, G., Song, J., & Beattie, E. (2008). Factors affecting burden of family caregivers of community-dwelling ambulatory elders with dementia in Korea. Archives of Psychiatric Nursing, 22(4), 226–234. doi: 10.1016/j.apnu.2007.12.005.CrossRefGoogle Scholar
  44. Markus, H. R. & Kitayama, S. (1991). Culture and the self: implications for cognition, emotion, and motivation. Psychological Review, 98(2), 224–253.CrossRefGoogle Scholar
  45. Mehta, K. K. (2005). Stress among family caregivers of old persons in Singapore. Journal of Cross-Cultural Gerontology, 20(4), 319–334. doi: 10.1007/s10823-006-9009-z.CrossRefGoogle Scholar
  46. Miller, B. & Cafasso, L. (1992). Gender differences in caregiving: fact or artifact? The Gerontologist, 32(4), 498–507. doi: 10.1093/geront/32.4.498.CrossRefGoogle Scholar
  47. Mok, E., Lai, C. K. Y., Wong, F. L. F., & Wan, P. (2007). Living with early-stage dementia: the perspective of older Chinese people. Journal of Advanced Nursing, 59(6), 591–600. doi: 10.1111/j.1365-2648.2007.04368.x.CrossRefGoogle Scholar
  48. Moon-Doo, K., Seong-Chul, H., Chang-In, L., Su-Young, K., Im-Ok, K., & Sang-Yi, L. (2009). Caregiver burden among caregivers of Koreans with dementia. Gerontology, 55(1), 106–113. doi: 10.1159/000176300.CrossRefGoogle Scholar
  49. O’Shaughnessy, M., Lee, K., & Lintern, T. (2010). Changes in the couple relationship in dementia care: spouse carers’ experiences. Dementia: The International Journal of Social Research and Practice, 9(2), 237–258. doi: 10.1177/1471301209354021.CrossRefGoogle Scholar
  50. Papastavrou, E., Tsangari, H., Karayiannis, G., Papacostas, S., Efstathiou, G., & Sourtzi, P. (2011). Caring and coping: the dementia caregivers. Aging & Mental Health, 15(6), 702–711. doi: 10.1080/13607863.2011.562178.CrossRefGoogle Scholar
  51. Park, M. & Chesla, C. (2007). Revisiting confucianism as a conceptual framework for asian family study. Journal of Family Nursing, 13(3), 293–311. doi: 10.1177/1074840707304400.CrossRefGoogle Scholar
  52. Pearlin, L. I., Menaghan, E. G., Lieberman, M. A., & Mullan, J. T. (1981). The stress process. Journal of Health and Social Behavior, 22(4), 337–356.CrossRefGoogle Scholar
  53. Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30(5), 583–594. doi: 10.1093/geront/30.5.583.CrossRefGoogle Scholar
  54. Perry, J. (2002). Wives giving care to husbands with Alzheimer’s disease: A process of interpretive caring. Research in Nursing & Health, 25(4), 307–316. doi: 10.1002/nur.10040.CrossRefGoogle Scholar
  55. Saw, A. & Okazaki, S. (2012). What is the psychology of Asians? In E. C. Chang (Ed.), Handbook of adult psychopathology in Asians (pp. 15–29). New York: Oxford University Press.CrossRefGoogle Scholar
  56. Serpe, R. T. (1987). Stability and change in self: A structural symbolic interactionist explanation. Social Psychology Quarterly, 50(1), 44–55.CrossRefGoogle Scholar
  57. Skaff, M. M. & Pearlin, L. L. (1992). Caregiving: role engulfment and the loss of self. The Gerontologist, 32(5), 656–664. doi: 10.1093/geront/32.5.656.CrossRefGoogle Scholar
  58. Smith, J. A. (1995). Semi structured interviewing and qualitative analysis. In J. A. Smith, R. Harre, & L. V. Langenhove (Eds.), Rethinking methods in psychology. London: Sage.Google Scholar
  59. Smith, J. A. (2011). Evaluating the contribution of interpretative phenomenological analysis. Health Psychology Review, 5(1), 9–27. doi: 10.1080/17437199.2010.510659.CrossRefGoogle Scholar
  60. Smith, J. A. & Osborn, M. (2003). Interpretative phenomenological analysis. In J. A. Smith (Ed.), Qualitative psychology. London: Sage.Google Scholar
  61. Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis: Theory, method and research. London: Sage Publications.Google Scholar
  62. Sneed, J. R. & Whitbourne, S. K. (2005). Models of the aging self. Journal of Social Issues, 61(2), 375–388.CrossRefGoogle Scholar
  63. Toh, Y.C. (2012). Number of dementia cases set to soar. The Straits Times.Google Scholar
  64. Waite, A., Bebbington, P., Skelton-Robinson, M., & Orrell, M. (2004). Social factors and depression in carers of people with dementia. International Journal of Geriatric Psychiatry, 19(6), 582–587. doi: 10.1002/gps.1136.CrossRefGoogle Scholar
  65. World Health Organization (2012). Dementia cases set to triple by 2050 but still largely ignored. Retrieved from http://www.who.int/mediacentre/news/releases/2012/ dementia_20120411/en/index.html
  66. Yap, P., & Seng, B.K. (2008). Profiling the Dementia Family Carer in Singapore. Retrieved from http://www.alz.org.sg/about-dementia/research
  67. Zimmerman, M. (1995). Psychological empowerment: issues and illustrations. American Journal of Community Psychology, 23(5), 581–598. Retrieved from: http://link.springer.com/article/10.1007/BF02506983

Copyright information

© Springer Science+Business Media New York 2016

Authors and Affiliations

  • Jane Tuomola
    • 1
  • Jiaying Soon
    • 1
  • Paul Fisher
    • 2
  • Philip Yap
    • 3
  1. 1.JCU SingaporeSingaporeSingapore
  2. 2.Department of Psychological Sciences, Norwich Medical SchoolUniversity of East AngliaNorwichUK
  3. 3.Department of Geriatric MedicineKhoo Teck Puat HospitalSingaporeSingapore

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