Subjective well-being of adult daughter caregivers of a parent with dementia
Authors
-
Arina Shabrina
Faculty of Psychology, Padjajaran University, Indonesia
-
Eka Riyanti Purboningsih
Faculty of Psychology, Padjajaran University, Indonesia
-
Tiara Ratih Widiastuti
Faculty of Psychology, Padjajaran University, Indonesia
https://doi.org/10.24854/jpu149
Keywords:
dementia, subjective well-being, caregiverAbstract
Dementia is a neurodegenerative disorder associated with memory, language, problem solving, and other cognitive abilities. The psychological impact of dementia is not only experienced by the patients, but also by family caregivers, which could be associated with their subjective well-being. In Indonesia, children were culturally expected to take care their elderly parents and it is more emphasized on daughters. The purpose of this study was to explore the subjective well-being of adult daughter caregivers of a parent with dementia. A case study utilizing semi-structured interviews was conducted to four adult daughters (aged between 30-60 years) who performed as a caregiver. Two themes emerged from the cognitive component of subjective well-being:living arrangement and social relation with patients. Caregivers often experience negative emotions related to their role as a caregiver. The findings indicate that the dynamics of caregiver’s well-being was highly associated with their attitudes in accepting the role of taking care for their demented parents.
Downloads
References
Abubakar, A., Van de Vijver, F. J., Suryani, A. O., Handayani, P., & Pandia, W. S. (2015). Perceptions of parenting styles and their associations with mental health and life satisfaction among urban Indonesian adolescents. Journal of Child and Family Studies, 24(9), 2680-2692. https://doi.org/ 10.1007/s10826-014-0070-x
Albinsson, L., & Strang, P. (2003). Existential concerns of families of late-stage dementia patients: Questions of freedom, choices, isolation, death, and meaning. Journal of Palliative Medicine, 6(2), 225-235. https://doi.org/ 10.1089/109662103764978470 ·
Alzheimer’s Association. (2018). 2018 Alzheimer’s Disease Facts and Figures. https://alz.org/media/HomeOffice/Facts%20and%20Figures/facts-and-figures.pdf
Badan Pusat Statistik. (2019). Statistik Penduduk Lanjut Usia 2019. Badan Pusat Statistik. https://www.bps.go.id/publication/2019/12/20/ab17e75dbe630e05110ae53b/statistik-penduduk-lanjut-usia-2019.html
Bailes, C. O., Kelley, C. M., & Parker, N. M. (2016). Caregiver burden and perceived health competence when caring for family members diagnosed with Alzheimer's disease and related dementia. Journal of the American Association of Nurse Practitioners, 28(10), 534-540. https://doi.org/ 10.1002/2327-6924.12355
Beard, V. A., & Kunharibowo, Y. (2001). Living arrangements and support relationships among elderly Indonesians: Case studies from Java and Sumatra. International Journal of Population Geography, 7(1), 17-33.
Bengtsson, M. (2016). How to plan and perform a qualitative study using content analysis. NursingPlus Open, 2, 8-14. https://doi.org/10.1016/j.npls.2016.01.001
Brodaty, H., & Green, A. (2002). Defining the role of the caregiver in Alzheimer’s disease treatment. Drugs & aging, 19(12), 891-898. https://doi.org/10.2165/00002512-200219120-00001
Chai, D. S. C., & Kiat, P. Y. L. (2019). The role of general practitioners in helping caregivers of persons with dementia. The Singapore Family Physician, 45(5), 28-33. https://doi.org/10.33591/sfp.45.5.u6
Chaudhuri, J. D., & Das, S. (2006). The role of caregivers in the management of alzheimer’s disease: Examples from Asian Countries. Sultan Qaboos University Medical Journal, 6(2), 11-18. https://pubmed.ncbi.nlm.nih.gov/21748130/
Christensen, L.B. (2010). Experimental Methodology (10th ed.) Pearson.
Cox, C. B., & Albisu, K. (2003). The impact of caregiving for a relative with Alzheimer's disease: A comparison of those caring for persons living alone, spousal caregivers, and co-resident adult children. Journal of Mental Health And Aging, 9(1), 23–33.
Creswell, J. W. (2009). Research Design: Qualitative, quantitative, and mixed methods approaches (4th ed). Sage.
Diener, E. (1994). Assessing subjective well-being: Progress and opportunities. Social Indicators Research, 31(2), 103-157. https://doi.org/10.1007/BF01207052
Diener, E. D., Emmons, R. A., Larsen, R. J., & Griffin, S. (1985). The satisfaction with life scale. Journal of Personality Assessment, 49(1), 71-75. https://doi.org/ 10.1207/s15327752jpa4901_13
Diener, E., Lucas, R.E., & Oishi, S. (2002). Subjective well-being: The science of happiness and life satisfaction. Dalam Synder, C.R. & Lopez, S.J. (Eds.), Handbook of Positive Psychology (pp. 187-194). Oxford University Press.
Diener, E., Lucas, R. E., & Oishi, S. (2018). Advances and open questions in the science of subjective well-being. Collabra Psychology, 4(1), 1-78. https:// doi.org/10.1525/collabra.115
Diener, E., Lucas, R. E., & Scollon, C. N. (2006). Beyond the hedonic treadmill: Revising the adaptation theory of well-being. American Psychologist, 61(4), 305–314. https://doi.org/10.1037/0003-066X.61.4.305
Diener, E., & Ryan, K. (2009). Subjective well-being: A general overview. South African Journal of Psychology, 39(4), 391-406. https://doi.org/10.1177/008124630903900402
Diener, E., Sapyta, J. J., & Suh, E. (1998). Subjective well-being is essential to well-being. Psychological Inquiry, 9(1), 33-37. https://doi.org/10.1207/s15327965pli0901_3
Eid, M., & Diener, E. (2004). Global judgments of subjective well-being: Situational variability and long-term stability. Social indicators research, 65(3), 245-277. https://doi.org/10.1023/B:SOCI.0000003801.89195.bc
Fianco, A., Sartori, R. D., Negri, L., Lorini, S., Valle, G., & Fave, A, D. (2015). The relationship between burden and well-being among caregivers of Italian people diagnosed with severe neuromotor and cognitive disorders. Research in developmental disabilities, 39, 43-54. https://doi.org/10.1016/j.ridd.2015.01.006
Glasdam, S., Timm, H., & Vittrup, R. (2010). Support efforts for caregivers of chronically ill persons. Clinical Nursing Research, 19(3), 233-265. https://doi.org/10.1177/1054773810369683
Goldberg, A., & Rickler, K. S. (2011). The role of family caregivers for people with chronic illness. Rhode Island Medical Journal, 94(2), 41-42.
Graham, J., Spiliopoulou, P., Arbuckle, R., Bridge, J. A., & Cassidy, J. (2017). A pilot study of subjective well-being in colorectal cancer patients and their caregivers. Patient related outcome measures, 8, 111-119. https://doi.org/10.2147/PROM.S141815
Grover, S., Nehra, R., Malhotra, R., & Kate, N. (2017). Positive aspects of caregiving experience among caregivers of patients with dementia. East Asian Archives of Psychiatry, 27(2), 71-78.
Guo, M., Kim, S., & Dong, X. (2019). Sense of filial obligation and caregiving burdens among Chinese immigrants in the United States. Journal of the American Geriatrics Society, 67(S3), S564-S570. https://doi.org/10.1111/jgs.15735
Hajek, A., & König, H. H. (2016). Informal caregiving and subjective well-being: Evidence of a population-based longitudinal study of older adults in Germany. Journal of The American Medical Directors Association, 17(4), 300-305. https://doi.org/10.1016/j.jamda.2015.10.015
Hamama, L., & Sharon, M. (2013). Posttraumatic growth and subjective well-being among caregivers of chronic patients: A preliminary study. Journal of Happiness Studies, 14(6), 1717-1737. https://doi.org/10.1007/s10902-012-9405-8
Hammond, T., Weinberg, M. K., & Cummins, R. A. (2014). The dyadic interaction of relationships and disability type on informal carer subjective well-being. Quality of Life Research, 23(5), 1535-1542. https://doi.org/10.1007/s11136-013-0577-4
Hashimoto, A., Matsuoka, K., Yasuno, F., Takahashi, M., Iida, J., Jikumaru, K., & Kishimoto, T. (2017). Frontal lobe function in elderly patients with Alzheimer's disease and caregiver burden. Psychogeriatrics, 17(4), 267-272. https://doi.org/10.1111/psyg.12231
Himawan, K. K. (2020). The single’s struggle: Discovering involuntary singleness in indonesia through gender and religious perspectives. The Family Journal: Counseling and Therapy for Couples and Families, 28(4), 379-389. https://doi.org/10.1177/1066480720950419
Høgsnes, L., Norbergh, K. G., Danielson, E., & Melin-Johansson, C. (2016). The shift in existential life situations of adult children to parents with dementia relocated to nursing homes. The Open Nursing Journal, 10, 122-130. https://doi.org/ 10.2174/1874434601610010122
Johansson, K., Ekebergh, M., & Dahlberg, K. (2009). A lifeworld phenomenological study of the experience of falling ill with diabetes. International Journal of Nursing Studies, 46(2), 197-203. https://doi.org/10.1016/j.ijnurstu.2008.09.001
Keasberry, I. N. (2001). Elder care and intergenerational relationships in rural Yogyakarta, Indonesia. Ageing & Society, 21(5), 641-665.
Kjällman-Alm, A., Norbergh, K. G., & Hellzen, O. (2013). What it means to be an adult child of a person with dementia. International Journal of Qualitative Studies On Health And Well-being, 8(1), 21676. https://doi.org/10.3402/qhw.v8i0.21676
Kristanti, M. S., Engels, Y., Effendy, C., Utarini, A., & Vernooij-Dassen, M. (2018). Comparison of the lived experiences of family caregivers of patients with dementia and of patients with cancer in Indonesia. International psychogeriatrics, 30(6), 903-914.
Lloyd, J., Patterson, T., & Muers, J. (2016). The positive aspects of caregiving in dementia: A critical review of the qualitative literature. Dementia, 15(6), 1534-1561. https://doi.org/10.1177/1471301214564792
Lucas, R. E., & Baird, B. M. (2006). Global self-assessment. Dalam Eid, M., & Diener, E. (Eds.), Handbook of Multi-Method Measurement in Psychology (pp.29–42). American Psychological Association.
Maddux, J. E. (2018). Subjective well-being and life satisfaction: An introduction to conceptions, theories, and measures. Taylor & Francis.
Marks, N. F., Lambert, J. D., & Choi, H. (2002). Transitions to caregiving, gender, and psychological well?being: A prospective US national study. Journal of Marriage And Family, 64(3), 657-667.https://doi.org/10.1111/j.1741-3737.2002.00657.x
Mount, B. M., & Flanders, E. M. (2003). Existential suffering and the determinants of healing. European Journal of Palliative Care, 10(2), 40-42.
Paterson, B. L. (2001). The shifting perspectives model of chronic illness. Journal of Nursing Scholarship, 33(1), 21-26. https://doi.org/10.1111/j.1547-5069.2001.00021.x
Patterson, C. (2018). World alzheimer report 2018: The state of the art of dementia research: New frontiers. Alzheimer’s Disease International (ADI). https://www.alz.co.uk/research/WorldAlzheimerReport2018.pdf
Peña-Longobardo, L. M., & Oliva-Moreno, J. (2015). Caregiver burden in Alzheimer's disease patients in Spain. Journal of Alzheimer's Disease, 43(4), 1293-1302. https://doi.org/10.3233/JAD-141374.
Perren, S., Schmid, R., & Wettstein, A. (2006). Caregivers’ adaptation to change: The impact of increasing impairment of persons suffering from dementia on their caregivers’ subjective well-being. Aging and Mental Health, 10(5), 539-548.
Piiparinen, R., & Whitlatch, C. J. (2011). Existential loss as a determinant to well-being in the dementia caregiving dyad: A conceptual model. Dementia, 10(2), 185-201. https://doi.org/10.1177/1471301211398989
Pinquart, M., & Sörensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18(2), 250. https://doi.org/10.1037/0882-7974.18.2.250
Pinquart, M., & Sörensen, S. (2004). Associations of caregiver stressors and uplifts with subjective well-being and depressive mood: A meta-analytic comparison. Aging & Mental Health, 8(5), 438-449. https://doi.org/10.1080/13607860410001725036
Pinquart, M., & Sörensen, S. (2007). Correlates of physical health of informal caregivers: A meta-analysis. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 62(2), 126-137. https://doi.org/10.1093/geronb/62.2.P126
Queirós, A., Faria, D., & Almeida, F. (2017). Strengths and limitations of qualitative and quantitative research methods. European Journal of Education Studies. https://doi.org/10.5281/zenodo.887089
Riany, Y. E., Meredith, P., & Cuskelly, M. (2017). Understanding the influence of traditional cultural values on Indonesian parenting. Marriage & Family Review, 53(3), 207-226.
Ryff, C. D. (2014). Self-realisation and meaning making in the face of adversity: A eudaimonic approach to human resilience. Journal of Psychology in Africa, 24(1), 1-12. https://doi.org/10.1080/14330237.2014.904098
Schwarz, N., & Strack, F. (1999). Reports of subjective well-being: Judgmental processes and their methodological implications. Dalam D. Kahneman, E. Diener, & N. Schwarz (Eds.), Well-being: The foundations of hedonic psychology (pp. 61–84). Russell Sage.
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
Shakeel, S., Rana, S. A., & Malik, N. I. (2015). Burden of care, mental health and subjective well being of family caregivers of elderly patients. Pakistan Journal of Professional Psychologistsl, 6(1), 1-16.
Singh, G., & Dubey, A. (2016). Mental Health and Well-Being of Caregivers: A Review of the Literature. The International Journal of Indian Psychology, 3(4), 98-105.
Spector, W. D., & Kemper, P. (1994). Disability and cognitive impairment criteria: targeting those who need the most home care. The Gerontologist, 34(5), 640-651. https://doi.org/10.1093/geront/34.5.640
Sullivan, A. B., & Miller, D. (2015). Who is taking care of the caregiver?. Journal of Patient Experience, 2(1), 7-12. https://doi.org/10.1177/237437431500200103
Tremont, G. (2011). Family caregiving in dementia. Medicine and Health, 94(2), 36-38.
Tumanggor, R. D. (2020). Female caregiver devotion as a stress factor in caring for hospitalized elderly in Indonesia. International Journal of Nursing Education, 12(2), 106-111.
Van den Berg, B., Fiebig, D. G., & Hall, J. (2014). Well-being losses due to care-giving. Journal of Health Economics, 35, 123-131.https://doi.org/10.1016/j.jhealeco.2014.01.008
Van Wijngaarden, E., Van der Wedden, H., Henning, Z., Komen, R., & The, A.M. (2018). Entangled in uncertainty: The experience of living with dementia from the perspective of family caregivers. PloS One, 13(6), 1-21. https://doi.org/10.1371/journal.pone.0198034
Vizzachi, B. A., Daspett, C., Cruz, M. G. D. S., & Horta, A. L. D. M. (2015). Family dynamics in face of Alzheimer's in one of its members. Revista da Escola de Enfermagem da USP, 49(6), 931-936. http://dx.doi.org/10.1590/S0080-623420150000600008
Wilson, R. S., Segawa, E., Boyle, P. A., Anagnos, S. E., Hizel, L. P., & Bennett, D. A. (2012). The natural history of cognitive decline in Alzheimer's disease. Psychology and Aging, 27(4), 1008. http://dx.doi.org/10.1037/a0029857
World Health Organization. (2006). Neurological disorders: Public health challenges. https://www.who.int/mental_health/publications/neurological_disorders_ph_challenges/en/
World Health Organization. (2015). Supporting informal caregivers of people living with dementia. https://www.who.int/mental_health/neurology/dementia/dementia_thematicbrief_informal_care.pdf
World Health Organization. (2019). Dementia fact sheets. https://www.who.int/news-room/fact-sheets/detail/dementia
Yee, B. W. K. (1997). The social and cultural context of adaptive aging by Southeast Asian elders. Dalam J. Sokolovsky (Eds.), The Cultural Context of Aging: Worldwide Perspectives (pp. 293–303). Praeger Publishers.
Yu, D. S. F., Cheng, S. T., & Wang, J. (2018). Unravelling positive aspects of caregiving in dementia: An integrative review of research literature. International Journal of Nursing Studies, 79, 1-26. https://doi.org/10.1016/j.ijnurstu.2017.10.008
Yuhas, N., McGowan, B., Fontaine, T., Czech, J., & Gambrell-Jones, J. (2006). Psychosocial interventions for disruptive symptoms of dementia. Journal of Psychosocial Nursing and Mental Health Services, 44(11), 34-42. https://doi.org/10.3928/02793695-20061101-06
Downloads
Published
How to Cite
Issue
Section
Citation Check
License
Copyright (c) 2020 Arina Shabrina, Eka Riyanti Purboningsih, Tiara Ratih Widiastuti
This work is licensed under a Creative Commons Attribution 4.0 International License.
The authors agree to the following terms:
- Authors retain copyright and grant the journal the right of first publication with the work simultaneously licensed under a Creative Commons Attribution License that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.
- Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) for the exposure of their work with an acknowledgement of Jurnal Psikologi Ulayat: Indonesian Journal of Indigenous Psychology (JPU) as an outlet of their published work.
This work is licensed under a Creative Commons Attribution 4.0 International License.
