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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.

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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.
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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:

  1. Alzheimer Indonesia. (2019, April 22). Statistik tentang demensia [Statistics on dementia].
  2. Alzheimer’s Disease International. (2019). World Alzheimer report 2019: Attitudes to dementia. Alzheimer’s Disease International.
  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.
  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.
  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.
  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.
  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.
  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.
  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.
  12. Etikan, I. (2016). Comparison of convenience sampling and purposive sampling. American Journal of Theoretical and Applied Statistics, 5(1), 1.
  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.
  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.
  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.
  16. Indonesia Central Bureau of Statistics. (2020). Statistik penduduk lanjut usia 2020 [Elderly population statistics 2020]. 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.
  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.
  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.
  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.
  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.
  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.
  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.
  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.
  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.
  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).
  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.
  28. Mukadam, N., & Livingston, G. (2012). Reducing the stigma associated with dementia: Approaches and goals. Aging Health, 8(4), 377–386.
  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.
  31. Pradana, A. A., Sahar, J., & Permatasari, H. (2022). Caregiving people with dementia: Positive responses experienced by spouses. Enfermeria Global, 21(4), 450–459.
  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.
  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.
  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.
  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.
  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).
  37. Sandelowski, M. (2010). What’s in a name? Qualitative description revisited. Research in Nursing and Health, 33(1), 77–84.
  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.
  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.
  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.
  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.
  42. Swaffer, K. (2014). Dementia: Stigma, language, and dementia-friendly. Dementia, 13(6), 709–716.
  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.
  44. Thara, R., & Patel, V. (2010). Role of non-governmental organizations in mental health in India. Indian Journal of Psychiatry, 52(Suppl1), S389-S395.
  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.
  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.
  47. World Health Organization. (2015). Global action against. World Health Organization.
  48. World Health Organization. (2022). Dementia. World Health Organization.

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