Skip to main content

Advertisement

SpringerLink
Log in

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

  • ORIGINAL ARTICLE
  • Published:
Journal of Cross-Cultural Gerontology Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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

  • 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.

  • 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 

  • 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.

    Article  Google Scholar 

  • Bowlby (1980). Attachment and loss: Vol III. Loss: Sadness and depression. London: Hogarth Press.

    Google Scholar 

  • Bramley, N. & Eatough, V. (2005). The experience of living with Parkinson’s disease: An interpretative phenomenological analysis case study. Psychology & Health, 20, 223–235.

    Article  Google Scholar 

  • Brooker, D. (2003). What is person-centred care in dementia? Reviews in Clinical Gerontology, 13(3), 215–222. doi:10.1017/S095925980400108X.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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

  • 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.

    Article  Google Scholar 

  • Cheston, R. & Bender, M. (1999). Understanding dementia: The man with the worried eyes. London: Jessica Kingsley Publishers.

    Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

  • Dallos, R. & Vetere, A. (2005). Researching psychotherapy and counselling. New York: Open University Press.

    Google Scholar 

  • 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 

  • Department of Statistics Singapore. (2014). Population trends 2014. Retrieved from http://www.singstat.gov.sg/docs/default-source/default-document-library/publications/publications_and_papers/population_and_population_structure/population2014.pdf

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Epp, T. (2003). Person-centred dementia care: A vision to be refined. The Canadian Alzheimer’s Disease Review, April: 14–18. Retrieved from: http://www.stacommunications.com/customcomm/Back-issue_pages/AD_Review/ad2003e.html

  • 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.

    Article  Google Scholar 

  • Goode, W. J. (1960). A theory of role strain. American Sociological Review, 25(4), 483–496.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Heckhausen, J. & Schulz, R. (1995). A life-span theory of control. Psychological Review, 102(2), 284–304.

    Article  Google Scholar 

  • Higgins, E. T. (1987). Self-discrepancy: a theory relating self and affect. Psychological Review, 94(3), 319–340.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Ikels, C. (1998). The experience of dementia in China. Culture, Medicine and Psychiatry, 22(3), 257–283. doi:10.1023/A:1005399215185.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

  • Kitwood, T. (1997). Dementia reconsidered: The person comes first. Open University Press: Buckingham.

    Google Scholar 

  • 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.

    Article  Google Scholar 

  • Larkin, M., Watts, S., & Clifton, E. (2006). Giving voice and making sense in interpretative phenomenological analysis. Qualitative Research in Psychology, 3(2), 102–120.

    Article  Google Scholar 

  • Lawton, M. P., Kleban, M. H., Moss, M., & Rovine, M. (1989). Measuring caregiving appraisal. Journal of Gerontology, 44(3), 61–71.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Markus, H. R. & Kitayama, S. (1991). Culture and the self: implications for cognition, emotion, and motivation. Psychological Review, 98(2), 224–253.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Chapter  Google Scholar 

  • Serpe, R. T. (1987). Stability and change in self: A structural symbolic interactionist explanation. Social Psychology Quarterly, 50(1), 44–55.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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 

  • Smith, J. A. (2011). Evaluating the contribution of interpretative phenomenological analysis. Health Psychology Review, 5(1), 9–27. doi:10.1080/17437199.2010.510659.

    Article  Google Scholar 

  • Smith, J. A. & Osborn, M. (2003). Interpretative phenomenological analysis. In J. A. Smith (Ed.), Qualitative psychology. London: Sage.

    Google Scholar 

  • Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis: Theory, method and research. London: Sage Publications.

    Google Scholar 

  • Sneed, J. R. & Whitbourne, S. K. (2005). Models of the aging self. Journal of Social Issues, 61(2), 375–388.

    Article  Google Scholar 

  • Toh, Y.C. (2012). Number of dementia cases set to soar. The Straits Times.

  • 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.

    Article  Google Scholar 

  • 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

  • Yap, P., & Seng, B.K. (2008). Profiling the Dementia Family Carer in Singapore. Retrieved from http://www.alz.org.sg/about-dementia/research

  • 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

Download references

Author information

Authors and Affiliations

  1. JCU Singapore, 149 Sims Drive, Singapore, 387380, Singapore

    Jane Tuomola & Jiaying Soon

  2. Department of Psychological Sciences, Norwich Medical School, University of East Anglia, Norwich, NR4 7TJ, UK

    Paul Fisher

  3. Department of Geriatric Medicine, Khoo Teck Puat Hospital, 90 Yishun Central, Singapore, 768828, Singapore

    Philip Yap

Authors
  1. Jane Tuomola
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Jiaying Soon
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Paul Fisher
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Philip Yap
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Jane Tuomola.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Tuomola, J., Soon, J., Fisher, P. et al. Lived Experience of Caregivers of Persons with Dementia and the Impact on their Sense of Self: A Qualitative Study in Singapore. J Cross Cult Gerontol 31, 157–172 (2016). https://doi.org/10.1007/s10823-016-9287-z

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10823-016-9287-z

Keywords

Search

Navigation