Family Interactions Among Family Caregivers and Other Family Members of Older Adults with Dementia (OAWD) in Indonesia: A Phenomenological Analysis
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Abstract
Previous studies emphasize the effects of dementia on families, particularly those providing care. However, understanding of how caregiving influences the relationships between family caregivers and other relatives is limited, especially in the context of caring for older adults with dementia (OAWD) in Indonesia. The objective of this study is to explore the experiences of family caregivers of OAWD and other family members who face challenges and to understand the mechanisms of adaptation in family interactions within the context of caregiving for OAWD in Indonesia. This study employed a phenomenological research design involving in-depth interviews with thirty respondents: 15 family caregivers and 15 family members from one family relationship. Thematic analysis identified patterns from respondents’ perspectives. Family caregiver interactions and adaptations can be categorized into six themes. Findings highlight the significance of family interactions, strengthening ties, and adaptability in managing demanding roles. Caregivers and family members experience changes in interactions across diverse dementia care settings at home. It emphasizes the need for intervention support for families, as endorsed by policy and caregiver groups, aiming to enhance the care-life balance. This support is crucial for meeting the requirements of families with dementia care needs at home.
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References
• Alqhtani, S. Said, Barry, C., & King, B. (2021). A systematic review of family caregivers of persons with serious mental illnesses in non-Western countries. Saudi Journal of Nursing and Health Care, 4(3), 48–71. https://doi.org/10.36348/sjnhc.2021.v04i03.002
• Ashida, S., & Schafer, E. J. (2015). Family health information sharing among older adults: reaching more family members. Journal of Community Genetics, 6(17), 17–27. https://doi.org/10.1007/s12687-014-0197-x
• BPS-Statistics Indonesia. (2021, December 27). Statistik penduduk lanjut usia 2021 [Statistics on the elderly population 2021]. https://www.bps.go.id/publication/2021/12/21/c3fd9f27372f6ddcf7462006/statistik-penduduk-lanjut-usia-2021.html
• Barnes, M. D., Hanson, C. L., Novilla, L. B., Magnusson, B. M., Crandall, A. C., & Bradford, G. (2020). Family-centered health promotion: Perspectives for engaging families and achieving better health outcomes. INQUIRY: The Journal of Health Care Organization, Provision and Financing, 57. https://doi.org/10.1177/0046958020923537
• 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, 17–33. https://doi.org/10.1002/ijpg.202
• Bengtson, V. L. (2001). Beyond the nuclear family: The increasing importance of multigenerational bonds. Journal of Marriage and Family, 63(1), 1–16. https://doi.org/10.1111/j.1741-3737.2001.00001.x
• Berger, P., & Luckmann, T. (1991). The social construction of reality: A treatise in the sociology of knowledge (5th ed.). Penguin Books. https://doi.org/10.4324/9781315775357
• Binda, J., Yuan, C. W., Cope, N., Park, H., Choe, E. K., & Carroll, J. M. (2018). Supporting effective sharing of health information among intergenerational family members. ACM International Conference Proceeding Series, 18, 1–10. https://doi.org/10.1145/3240925.3240936
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
• Brodaty, H., & Donkin, M. (2009). Family caregivers of people with dementia. Dialogues in clinical neuroscience, 11(2), 217–228. https://doi.org/10.31887/DCNS.2009.11.2/hbrodaty
• Chen, M. C., & Lin, H. R. (2022). The experiences of family caregivers in response to a dementia diagnosis disclosure. BMC Psychiatry, 22(1), Article 475. https://doi.org/10.1186/s12888-022-04126-4
• Cipolletta, S., Mascolo, M. F., & Procter, H. (2022). intersubjectivity, joint action, and sociality. Journal of Constructivist Psychology, 35(3), 904–929. https://doi.org/10.1080/10720537.2020.1805066
• Cooper, R. A. (2021). “I am a caregiver”: Sense-making and identity construction through online caregiving narratives. Journal of Family Communication, 21(2), 77–89. https://doi.org/10.1080/15267431.2021.1889554
• Daley, S., Murray, J., Farina, N., Page, T., Brown, A., Basset, T., Livingston, G., Bowling, A., Knapp, M., & Banerjee, S. (2018). Understanding the quality of life of family carers of people with dementia: Development of a new conceptual framework. International Journal of Geriatric Psychiatry, 34(1), 79–86. https://doi.org/10.1002/gps.4990
• Dykstra, P. A., & Komter, A. E. (2012). Generational interdependencies in families: The Multilinks Research Program. Demographic Research, 27(18), 1–22. https://doi.org/10.4054/DemRes.2012.27.18
• Fitzpatrick, M. A. (2004). Family Communication Patterns Theory: Observations on its development and application. Journal of Family Communication, 4(3–4), 167–179. https://doi.org/10.1080/15267431.2004.9670129
• Fitzpatrick, M. A., & Ritchie, L. D. (1994). Communication schemata within the family: Multiple perspectives on family interaction. Human Communication Research, 20(3), 275–301. https://doi.org/10.1111/j.1468-2958.1994.tb00324.x
• Friedemann, M. L., & Buckwalter, K. C. (2014). Family caregiver role and burden related to gender and family relationships. Journal of Family Nursing, 20(3), 313–336. https://doi.org/10.1177/1074840714532715
• Galvin, K. M., & Braithwaite, D. O. (2014). Theory and research from the communication field: Discourses that constitute and reflect families. Journal of Family Theory & Review, 6(1), 97–111. https://doi.org/10.1111/jftr.12030
• García, M. R. (2015). Reality construction, communication, and daily life: An approach to Thomas Lukmann's work. Intercom: Revista Brasileira de Ciências Da Comunicação, 38(2), 19–38. https://doi.org/10.1590/1809-5844201522
• Grevenstein, D., Bluemke, M., Schweitzer, J., & Aguilar-Raab, C. (2019). Better family relationships–higher well-being: The connection between relationship quality and health-related resources. Mental Health and Prevention, 14, Article 200160. https://doi.org/10.1016/j.mph.2019.200160
• Groenewald, T. (2004). A phenomenological research design is illustrated. International Journal of Qualitative Methods, 3(1), 42–45. https://doi.org/10.1177/160940690400300104
• Hazzan, A. A., Dauenhauer, J., Follansbee, P., Hazzan, J. O., Allen, K., & Omobepade, I. (2022). Family caregiver quality of life and the care provided to older people living with dementia: Qualitative analyses of caregiver interviews. BMC Geriatrics, 22(1), Article 86. https://doi.org/10.1186/s12877-022-02787-0
• Heese, K. (2015). Ageing, dementia and society – An epistemological perspective. SpringerPlus, 4(1), Article 135. https://doi.org/10.1186/s40064-015-0910-1
• Huang, H. L., Lshyu, Y. I. L., Chen, M. C., Huang, C. C., Kuo, H. C., Chen, S. T., & Hsu, W. C. (2015). Family caregivers’ role implementation at different stages of dementia. Clinical Interventions in Aging, 10, 135–145. https://doi.org/10.2147/CIA.S60574
• Igarashi, A., Fukuda, A., Teng, L., Ma, F., & Dorey, J. (2020). Family caregiving in dementia and its impact on quality of life and economic burden in Japan-web based survey. Journal of Market Access & Health Policy, 8(1), Article 1720068. https://doi.org/10.1080/20016689.2020.1720068
• Irfan, B., Irfan, O., Ansari, A., Qidwai, W., & Nanji, K. (2017). Impact of caregiving on various aspects of the lives of caregivers. Cureus, 9(5), Article e1213. https://doi.org/10.7759/cureus.1213
• Johar, M., & Maruyama, S. (2011). Intergenerational cohabitation in modern Indonesia: Filial support and dependence. Health Economics, 20(1), 87–104. https://doi.org/10.1002/hec.1708
• Keasberry, I. N. (2001). Elder care and intergenerational relationships in rural Yogyakarta, Indonesia. Ageing and Society, 21(05), 641–665. https://doi.org/10.1017/S0144686X01008431
• Kristanti, M. S., Effendy, C., Utarini, A., Vernooij‐Dassen, M., & Engels, Y. (2019). The experience of family caregivers of patients with cancer in an Asian country: A grounded theory approach. Palliative Medicine, 33(6), 676–684. https://doi.org/10.1177/0269216319833260
• Kua, E. H. (2010). Elderly people with mental illness in South-East Asia: Rethinking a model of care. International Psychiatry, 7(2), 34–36. https://doi.org/10.1192/s1749367600005701
• McCauley, R., McQuillan, R., Ryan, K., & Foley, G. (2021). Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis. Palliative Medicine, 35(5), 875–885. https://doi.org/10.1177/0269216321999962
• Mehta, K. K. (2016). Multigenerational relationships within the Asian Family: Qualitative evidence from Singapore. International Journal of Sociology of the Family, 33(1), 63–77. https://www.jstor.org/stable/23070763
• Moore, H., & Gillespie, A. (2014). The caregiving bind: Concealing the demands of informal care can undermine the caregiving identity. Social Science & Medicine, 116, 102–109. https://doi.org/10.1016/j.socscimed.2014.06.038
• Ng, T. (2010). The unparalleled challenge of aging populations. Dementia and Geriatric Cognitive Disorders, 30(6), 454. https://doi.org/10.1159/000322955
• Nowell, L., Norris, J. M., White, D., & Moules, N. J. (2017). Thematic analysis. International Journal of Qualitative Methods, 16(1). https://doi.org/10.1177/1609406917733847
• Ong, P. A., Annisafitrie, F. R., Purnamasari, N., Calista, C., Sagita, N., Sofiatin, Y., & Dikot, Y. (2021). Dementia prevalence, comorbidities, and lifestyle among Jatinangor elders. Frontiers in Neurology, 12, Article 643480. https://doi.org/10.3389/fneur.2021.643480
• Park, J. Y., Pardosi, J. F., Islam, M. S., Respati, T., Chowdhury, K., & Seale, H. (2022). What does family involvement in care provision look like across hospital settings in Bangladesh, Indonesia, and South Korea? BMC Health Services Research, 22(1), Article 922. https://doi.org/10.1186/s12913-022-08278-7
• Pascal, J., Johnson, N., Dore, C., & Trainor, R. (2010). The lived experience of doing phenomenology. Qualitative Social Work, 10(2), 172–189. https://doi.org/10.1177/1473325009360830
• Prince, M. J., Wimo, A., Guerchet, M. M., Ali, G. C., Wu, Y. T., & Prina, M. (2015, September 21). World Alzheimer Report 2015: The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends. Alzheimer’s Disease International. https://www.alzint.org/resource/world-alzheimer-report-2015/
• Qibthiyyah, R., & Utomo, A. J. (2016). Family matters: Demographic change and social spending in Indonesia. Bulletin of Indonesian Economic Studies, 52(2), 133–159. https://doi.org/10.1080/00074918.2016.1211077
• Qualls, S. H. (2016). Caregiving families within the long-term services and support system for older adults. American Psychologist, 71(4), 283–293. https://doi.org/10.1037/a0040252
• Riffin, C., Van Ness, P. H., Wolff, J. L., & Fried, T. (2019). Multifactorial examination of caregiver burden in a national sample of family and unpaid caregivers. Journal of the American Geriatrics Society, 67(2), 277–283. https://doi.org/10.1111/jgs.15664
• Schröder-Butterfill, E. (2004). Inter-generational family support provided by older people in Indonesia. Ageing and Society, 24(4), 497–530. https://doi.org/10.1017/S0144686X0400234X
• Setiyani, R., & Windsor, C. (2019). Filial Piety: From the perspective of Indonesian young adults. Nurse Media Journal of Nursing, 9(1), 46–57. https://doi.org/10.14710/nmjn.v9i1.21170
• Silverstein, M., & Giarrusso, R. (2010). Aging and family life: A decade review. Journal of Marriage and Family, 72(5), 1039–1058. https://doi.org/10.1111/j.1741-3737.2010.00749.x
• Stevenson, C., Wakefield, J. R. H., Kellezi, B., Stack, R. J., & Dogra, S. (2022). Families as support and burden: A mixed methods exploration of the extent to which family identification and support predicts reductions in stress among disadvantaged neighborhood residents. Journal of Social and Personal Relationships, 39(4), 886–907. https://doi.org/10.1177/02654075211050071
• Sundler, A. J., Lindberg, E., Nilsson, C., & Palmér, L. (2019). Qualitative thematic analysis based on descriptive phenomenology. Nursing Open, 6(3), 733–739. https://doi.org/10.1002/nop2.275
• Thomas, P. A., Liu, H., & Umberson, D. (2017). Family relationships and well-being. Innovation in Aging, 1(3), Article igx025. https://doi.org/10.1093/geroni/igx025
• Tran, J. T., Theng, B., Tzeng, H. M., Raji, M., Serag, H., Shih, M., & Lee, W. M. (2023). Cultural diversity impacts caregiving experiences: A comprehensive exploration of differences in caregiver burdens, needs, and outcomes. Cureus, 15(10), Article e46537. https://doi.org/10.7759/cureus.46537
• Turana, Y., Tengkawan, J., Suswanti, I., Suharya, D., Riyadina, W., & Pradono, J. (2019). Primary prevention of Alzheimer’s disease in Indonesia. International Journal of Aging Research, 2, Article 40. https://doi.org/10.28933/ijoar-2019-06-2506
• Wang, J., Wu, B., Bowers, B. J., Lepore, M. J., Ding, D., McConnell, E. S., & Corazzini, K. N. (2019). Person-centered dementia care in China: A bilingual literature review. Gerontology & Geriatric Medicine, 5. https://doi.org/10.1177/2333721419844349
• Xiao, L. D., Wang, J., He, G., Bellis, A. D., Verbeeck, J., & Kyriazopoulos, H. (2014). Family caregiver challenges in dementia care in Australia and China: A critical perspective. BMC Geriatrics, 14, Article 6. https://doi.org/10.1186/1471-2318-14-6
• Yuan, Q., Zhang, Y., Samari, E., Jeyagurunathan, A., Goveas, R., Ng, L. L., & Subramaniam, M. (2023). Positive aspects of caregiving among informal caregivers of persons with dementia in the Asian context: A qualitative study. BMC Geriatrics, 23, Article 51. https://doi.org/10.1186/s12877-023-03767-8
• Zhang, Y., & Jean Yeung, W. J. (2012). Shifting boundaries of care in Asia: An introduction. International Journal of Sociology and Social Policy, 32, 612–622. https://doi.org/10.1108/01443331211280665
