DOI: https://doi.org/10.14710/nmjn.v13i2.55729

Barriers and Support for Family Caregivers in Caring for Older Adults with Dementia: A Qualitative Study in Indonesia

Rita Hadi Widyastuti orcid  -  Doctoral Program in Nursing, Faculty of Nursing, Universitas Indonesia, Indonesia
*Junaiti Sahar orcid scopus  -  Department of Community Nursing, Faculty of Nursing, Universitas Indonesia, Indonesia
Etty Rekawati orcid  -  Department of Community Nursing, Faculty of Nursing, Universitas Indonesia, Indonesia
Aria Kekalih orcid  -  Department of Community Medicine, Faculty of Medicine, Universitas Indonesia, Indonesia
Open Access Copyright (c) 2023 Nurse Media Journal of Nursing
Creative Commons License This work is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.

Citation Format:
Abstract

Background:  Understanding the barriers and support that family caregivers face when caring for older adults with dementia is critical for improving the quality of  dementia care. However, research in this area remains limited in Indonesia. 

Purpose: This study aimed to explore the barriers and support for family caregivers in caring for older adults with dementia in Indonesia.

Methods: A descriptive phenomenological study was conducted among 15 family caregivers who cared for older adults with dementia. Purposive sampling was used to recruit the participants. Inclusion criteria included primary family caregivers who provided care for four hours per day for at least six months, were proficient in Indonesian, assisted older adults in daily activities, and were capable of expressing their experiences. Data were collected using in-depth semi-structured interviews and analyzed using the Colaizzi method.  

Results: This study found that family caregivers faced barriers during the care of older adults with dementia, which have decreased the quality of care. These barriers included inadequate knowledge and skills of family caregivers regarding dementia, stigma, lack of knowledge and awareness in the community, limited availability of healthcare services, and healthcare professionals’ lack of knowledge about dementia. On the other hand, support received by family caregivers within the family, support from other family caregivers, and education provided by NGOs about caring for someone with dementia have shown a positive impact in reducing the burden on caregivers and improving the quality of care. Therefore, appropriate support is essential for family caregivers caring for older adults with dementia.

Conclusion: This study showed that barriers originating from family caregivers, community awareness, access to health services, and barriers from health workers have impacted poor quality of care, while the support of families, fellow family caregivers, and NGOs have contributed to good quality of care. Further studies are needed to explore the perspectives of family caregivers representing different cultures in Indonesia.
Fulltext View|Download
Keywords: Barrier; caregiving; dementia; family caregiver; Indonesia; support
Funding: The Ministry of Education, Culture, Research, and Technology of the Republic of Indonesia, through the Doctoral Dissertation Research Grant with number NKB-899/UN2.RST/HKP.05.00/2022, and Universitas Diponegoro for providing educational scholarships.

Article Metrics:

Article Info
Section: Articles
Language : EN
Recent articles
The Relationships between Physical and Emotional Symptoms and Health-Related Quality of Life of Patients after Percutaneous Coronary Intervention Factors Influencing the Quality of Life in Thai Cancer Patients Receiving Chemotherapy during COVID-19 Pandemic Effects of Direct and Indirect Factors on Attitude toward the COVID-19 Vaccine in Pregnant Women Editorial Back Matter Editorial Front Matter More recent articles
Most cited articles
Back-matter Workplace Stressors and Coping Strategies Among Public Hospital Nurses in Medan, Indonesia Review: Factors Relating to Nurses’ Caring Behaviors for Dying Patients PENGARUH LATIHAN FISIK; SENAM AEROBIK TERHADAP PENURUNAN KADAR GULA DARAH PADA PENDERITA DM TIPE 2 DI WILAYAH PUSKESMAS BUKATEJA PURBALINGGA PERAN SERTA KELUARGA PADA LANSIA YANG MENGALAMI POST POWER SYNDROME More cited articles
  1. Alzheimer Indonesia. (2019, April 22). Statistik tentang demensia [Statistics on dementia]. https://alzi.or.id/statistik-tentang-demensia/
  2. Alzheimer’s Disease International. (2019). World Alzheimer report 2019: Attitudes to dementia. Alzheimer’s Disease International. https://www.alzint.org/u/WorldAlzheimerReport2019.pdf
  3. Armstrong, M. J., & Alliance, S. (2019). Virtual support groups for informal caregivers of individuals with dementia: A scoping review. Alzheimer Disease and Associated Disorders, 33(4), 362–369. https://doi.org/10.1097/WAD.0000000000000349
  4. Beardon, S., Patel, K., Davies, B., & Ward, H. (2018). Informal carers’ perspectives on the delivery of acute hospital care for patients with dementia: A systematic review. BMC Geriatrics, 18(1), 1–11. https://doi.org/10.1186/s12877-018-0710-x
  5. Bernabéu-Álvarez, C., Faus-Sanoguera, M., Lima-Serrano, M., & Lima-Rodríguez, J. S. (2020). Systematic review: Influence of self-help groups on family caregivers. Enfermeria Global, 19(2), 576–590. https://doi.org/10.6018/eglobal.392181
  6. Burgener, S. C., Buckwalter, K., Perkhounkova, Y., Liu, M. F., Riley, R., Fitzsimmons, S., & Hahn-swanson, C. (2015). Perceived stigma in persons with early-stage dementia : Longitudinal findings : Part 1. Dementia, 14(5), 589-608. https://doi.org/10.1177/1471301213508399
  7. Carter, G., Monaghan, C., & Santin, O. (2020). What is known from the existing literature about peer support interventions for carers of individuals living with dementia: A scoping review. Health and Social Care in the Community, 28(4), 1134–1151. https://doi.org/10.1111/hsc.12944
  8. Colaizzi, P. F. (1978). Psychological research as the phenomenologist views it. In R. S. Vaile & M. King (Eds.), Existential phenomenological alternatives for psychology (pp. 48-71). Oxford University Press
  9. Creswell, J. W., & Creswell, J. D. (2018). Research design: Qualitative, quantitative, and mixed methods approaches. SAGE Publications, Inc
  10. Dementia Australia. (2019). Hospital care for people living with dementia. https://www.dementia.org.au/sites/default/files/media/Hospital%20stays%20for%20people%20with%20dementia.pdf
  11. Devi, F., Yuan, Q., Wang, P., Tan, G. T. H., Goveas, R. R., Ng, L. L., Chong, S. A., & Subramaniam, M. (2020). Positive aspect of caregiving among primary informal dementia caregivers in Singapore. PLoS One, 15(8 August), 1–11. https://doi.org/10.1371/journal.pone.0237677
  12. Etikan, I. (2016). Comparison of convenience sampling and purposive sampling. American Journal of Theoretical and Applied Statistics, 5(1), 1. https://doi.org/10.11648/j.ajtas.20160501.11
  13. Gauthier, S., Webster, C., Servaes, S., Rosa-Neto, P., & Morais, J. A. (2022). World alzheimer report 2022: Life after diagnosis: Navigating treatment, care and support. Alzheimer’s Disease International. https://www.alzint.org/u/World-Alzheimer-Report-2022.pdf
  14. Hung, L., Hudson, A., Gregorio, M., Jackson, L., Mann, J., Horne, N., Berndt, A., Wallsworth, C., Wong, L., & Phinney, A. (2021). Creating dementia-friendly communities for social inclusion: A scoping review. https://doi.org/10.1177/23337214211013596
  15. Immanuel, J., & Natalia, E. C. (2021). Strategi kampanye Alzheimer Indonesia #janganmaklumdenganpikun dalam membangun kesadaran akan isu demensia [The Alzheimer Indonesia’s campaign strategy #janganmaklumdenganpikun in building awareness of dementia issues]. PRofesi Humas, 6(1), 67. https://doi.org/10.24198/prh.v6i1.28296
  16. Indonesia Central Bureau of Statistics. (2020). Statistik penduduk lanjut usia 2020 [Elderly population statistics 2020]. https://www.bps.go.id/publication/2020/12/21/ 0fc023221965624a644c1111/statistik-penduduk-lanjut-usia-2020.html
  17. Ineu de Oliveira, T., Rodrigues Maziero, B., Ilha, S., Segabinazzi Pacheco, L., & Schroeder de Oliveira, F. (2017). Daily family members/caregiver with alzheimer: Support group contributions. Journal of Nursing UFPE / Revista de Enfermagem UFPE, 11(2), 506–514. https://doi.org/10.5205/reuol.10263-91568-1-RV.1102201704
  18. Kadar, K. S., Francis, K., & Sellick, K. (2013). Ageing in Indonesia - Health status and challenges for the future. Ageing International, 38(4), 261–270. https://doi.org/10.1007/s12126-012-9159-y
  19. Khonje, V., Milligan, C., Yako, Y., Mabelane, M., Borochowitz, K. E., & Jager, C. A. De. (2015). Knowledge, attitudes and beliefs about dementia in an urban Xhosa-speaking community in South Africa. Advances in Alzheimer’s Disease, 4(2), 21–36. http://dx.doi.org/10.4236/aad.2015.42004
  20. Kim, S. K., & Park, M. (2017). Effectiveness of person-centered care on people with dementia: A systematic review and meta-analysis. Clinical Interventions in Aging, 12, 381–397. https://doi.org/10.2147/CIA.S117637
  21. Kristanti, M. S., Engels, Y., Effendy, C., Astuti., 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. https://doi.org/10.1017/S1041610217001508
  22. Leocadie, M. C., Morvillers, J. M., Pautex, S., & Rothan-Tondeur, M. (2020). Characteristics of the skills of caregivers of people with dementia: Observational study. BMC Family Practice, 21(1), 1–13. https://doi.org/10.1186/s12875-020-01218-6
  23. Lindeza, P., Rodrigues, M., Costa, J., Guerreiro, M., & Rosa, M. M. (2020). Impact of dementia on informal care: A systematic review of family caregivers’ perceptions. BMJ Supportive and Palliative Care, 1–12. https://doi.org/10.1136/bmjspcare-2020-002242
  24. Lion, K. M., Szcześniak, D., Bulińska, K., Evans, S. B., Evans, S. C., Saibene, F. L., d’Arma, A., Farina, E., Brooker, D. J., Chattat, R., Meiland, F. J. M., Dröes, R. M., & Rymaszewska, J. (2020). Do people with dementia and mild cognitive impairments experience stigma? A cross-cultural investigation between Italy, Poland and the UK. Aging and Mental Health, 24(6), 947–955. https://doi.org/10.1080/13607863.2019.1577799
  25. 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
  26. Lot, M., Shahboulaghi, F. M., Jablonski, R. A., Ebadi, A., Fadayevatan, R., & Foroughan, M. (2023). Facilitators and barriers for families caring for adults living with Alzheimer ’ s dementia : A qualitative study. 47(2022). https://doi.org/10.1016/j.gerinurse.2022.06.013
  27. Mfene, X. P., & Pillay, B. J. (2023). Dementia-friendly communities: Exploring terms used to describe dementia, attitudes and reactions towards people with dementia in Ilembe district, South Africa. Dementia, 1–14. https://doi.org/10.1177/14713012231165112
  28. Mukadam, N., & Livingston, G. (2012). Reducing the stigma associated with dementia: Approaches and goals. Aging Health, 8(4), 377–386. https://doi.org/10.2217/ahe.12.42
  29. Polit, D. F., & Beck, C. T. (2014). Essentials of nursing research: Appraising evidence for nursing practice (8th ed.). Lippincott Williams & Wilkins
  30. Pradana, A. A., Sahar, J., & Permatasari, H. (2021). Dementia: How does spouse perceive it? Enfermeria Clinica, 31(December), S16–S19. https://doi.org/10.1016/j.enfcli.2020.10.007
  31. Pradana, A. A., Sahar, J., & Permatasari, H. (2022). Caregiving people with dementia: Positive responses experienced by spouses. Enfermeria Global, 21(4), 450–459. https://doi.org/10.6018/eglobal.515341
  32. Prince, M., Comas-Herrera, A., Knapp, M., Guerchet, M., & Karagianniduo, M. (2016). Alzhaimer’s disease international improving healthcare for people living with dementia. Alzheimer’s Disease International. https://www.alzint.org/u/WorldAlzheimerReport2016.pdf
  33. Putri, A. K., Gustriawanto, N., Rahapsari, S., Sholikhah, A. R., Prabaswara, S., Kusumawardhani, A. C., & Kristina, S. A. (2021). Exploring the perceived challenges and support needs of Indonesian mental health stakeholders: A qualitative study. International Journal of Mental Health Systems, 15(1), 1–9. https://doi.org/10.1186/s13033-021-00504-9
  34. Putri, Y. S. E., Putra, I. G. N. E., Falahaini, A., & Wardani, I. Y. (2022). Factors associated with caregiver burden in caregivers of older patients with dementia in Indonesia. International Journal of Environmental Research and Public Health, 19(19), 12437. https://doi.org/10.3390/ijerph191912437
  35. Røsvik, J., & Rokstad, A. M. M. (2020). What are the needs of people with dementia in acute hospital settings, and what interventions are made to meet these needs? A systematic integrative review of the literature. BMC Health Services Research, 20(1), 1-20. https://doi.org/10.1186/s12913-020-05618-3
  36. Sajadi, H. S., Ghadirian, L., Rajabi, F., Sayarifard, A., Rostamigooran, N., & Majdzadeh, R. (2022). Interventions to increase participation of NGOs in preventive care: A scoping review. Health Science Reports, 5(5). https://doi.org/10.1002/hsr2.770
  37. Sandelowski, M. (2010). What’s in a name? Qualitative description revisited. Research in Nursing and Health, 33(1), 77–84. https://doi.org/10.1002/nur.20362
  38. Sari, I. W. W., & Nirmalasari, N. (2020). Preparedness among family caregivers of patients with non-communicable diseases in Indonesia. Nurse Media Journal of Nursing, 10(3), 339–349. https://doi.org/10.14710/nmjn.v10i3.31954
  39. Shorey, S., & Ng, E. D. (2022). Examining characteristics of descriptive phenomenological nursing studies: A scoping review. Journal of Advanced Nursing, 78(7), 1968–1979. https://doi.org/10.1111/jan.15244
  40. Suriastini, N. W., Oktarina, D., Sikoki, B., Indriati, S., Umaroh, R., Alfah, D., & Lestari, K. W. (2023). Community health centers response to the need of dementia care. 109. https://doi.org/10.1177/22799036231161972
  41. Suriastini, N. W., Turana, Y., Supraptilah, B., Wicaksono, T. Y., & Mulyanto, E. D. (2020). Prevalence and risk factors of dementia and caregiver's knowledge of the early symptoms of Alzheimer's disease. Aging Medicine and Healthcare, 11(2), 60–66. https://doi.org/10.33879/AMH.2020.065-1811.032
  42. Swaffer, K. (2014). Dementia: Stigma, language, and dementia-friendly. Dementia, 13(6), 709–716. https://doi.org/10.1177/1471301214548143
  43. Teichmann, B., Gkioka, M., Kruse, A., & Tsolaki, M. (2022). Informal caregivers’ attitude toward dementia: The impact of dementia knowledge, confidence in dementia care, and the behavioral and psychological symptoms of the person with dementia. A cross-sectional study. Journal of Alzheimer’s Disease, 88(3), 971-984. https://doi.org/10.3233/JAD-215731
  44. Thara, R., & Patel, V. (2010). Role of non-governmental organizations in mental health in India. Indian Journal of Psychiatry, 52(Suppl1), S389-S395. https://doi.org/10.4103/0019-5545.69276
  45. Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042
  46. Widyastuti, R. H., Sahar, J., & Permatasari, H. (2011). Pengalaman keluarga merawat lansia dengan demensia (Family’s experiences of caring for elderly with dementia). Jurnal Ners Indonesia, 1(2), 49–57. https://ejournal.unri.ac.id/index.php/JNI/article/view/639
  47. World Health Organization. (2015). Global action against. World Health Organization. https://www.who.int/publications/i/item/9789241509114
  48. World Health Organization. (2022). Dementia. World Health Organization. https://www.who.int/news-room/fact-sheets/detail/dementia

Last update:

  1. Development of Online Training Modules on Dementia Care at Home for Family Caregivers

    Rita Hadi Widyastuti, Junaiti Sahar, Etty Rekawati, Aria Kekalih. The Open Nursing Journal, 18 (1), 2024. doi: 10.2174/0118744346297277240401034945

  2. Dementia knowledge of family caregivers in Indonesia: A cross-sectional survey study

    Sharon Andrews, Sri Mulyani, Azam David Saifullah, Michael Dirk, Tara Sani, Nelson Sudiyono, Thi Thuy Ha Dinh, DY Suharya, Christantie Effendy, Kusrini Kadar, Yuda Turana. Belitung Nursing Journal, 10 (5), 2024. doi: 10.33546/bnj.3457

  3. Constraints on Transport of Injured Victims after the Earthquake for Disaster Victims’ Evacuation Model Development: A Phenomenological Study

    Muhammad Muhammad, Hajjul Kamil, Muhammad Adlim, Irwandi Irwandi. Heca Journal of Applied Sciences, 2 (1), 2024. doi: 10.60084/hjas.v2i1.139

Last update: 2025-05-08 19:50:10

No citation recorded.