A Systematic Review on Caregiver’s Burden Among Caregivers of Dementia Patients in Malaysia
Main Article Content
Abstract
Introduction: Increasing prevalence of dementia and the associated caregiving burden are expected due to longer life expectancy. This review aimed to critically assess dementia-driven caregiving burden and the associated factors in Malaysia. Methods: A systematic search using several combinations of keywords was conducted in Ovid Medline, PubMed, Science Direct, ProQuest, and Ebscohost databases. The primary outcome was the score or level of caregiver burden, while the secondary outcome was the factors associated with such burden. The quality of the individual articles was assessed using the Newcastle–Ottawa Scale and the Joanna Briggs Institute checklist. Results: The systematic search resulted in seven studies being reviewed, consisting of six cross-sectional studies and one quasi-experimental study. Using the Zarit Burden Interview, two studies reported moderate caregiver burden with mean scores of 35.4 (15.08) and 46.0 (17.0). High levels of burden or strain were reported using the Caregiver Strain Index in other studies. The three main associated factors with burden identified in these studies were the presence of behavioural and psychological symptoms of dementia (BPSD), higher education level, and lack of social support. Conclusion: Moderate to severe caregiving burden level were found to be experienced by dementia caregivers in this country. High education, lack of support, as well as taking care of patient with BPSD being the most prominent factors associated with burden. Therefore, burden should be regularly assessed among the dementia caregivers especially among those with lack of social support and manage family members with BPSD, as to prevent adverse outcome from dementia caregiving.
Downloads
Article Details
References
World Health Organization. Dementia [Internet]. WHO Bulletin. [cited 2021 Jul 2]. Available from: https://www.who.int/news-room/fact-sheets/detail/ dementia
Prince M, Bryce R, Albanese E, Wimo A, Ribeiro W, Ferri CP. The global prevalence of dementia: A systematic review and metaanalysis. Alzheimer’s Dement [Internet]. 2013;9(1):63-75. e2. doi:10.1016/j.jalz.2012.11.007
Alzheimer’s Disease International. Dementia in the Asia Pacific Region. 2014. Available from: https:// www.alzint.org/u/Dementia-Asia-Pacific-2014.pdf
Griffiths AW, Cheong WL, Saw PS, Parveen S. Perceptions and attitudes towards dementia among university students in Malaysia. BMC Med Educ. 2020;20(1):1–7. doi:10.1186/s12909-020-1972-5
Cheng ST. Dementia Caregiver Burden: a Research Update and Critical Analysis. Curr Psychiatry Rep. 2017;19(9). doi:10.1007/s11920-017-0818-2
Hildebrand MW. Caregiving after Stroke. In: Stroke Rehabilitation. Elsevier; 2016. p. 309–27. doi: 10.1016/B978-0-323-17281-3.00015-0
Zarit SH, Todd PA, Zarit JM. Subjective Burden of Husbands and Wives as Caregivers : A Longitudinal Study. Gerontologist. doi:10.1093/geront/26.3.260 1986;26(3):260–6.
Bremer P, Cabrera E, Leino-kilpi H, Lethin C, Saks K, Sutcliffe C, et al. Informal dementia care : Consequences for caregivers ’ health and health care use in 8 European countries. Health Policy (New York) [Internet]. 2015;119(11):1459–71. doi:10.1016/j.healthpol.2015.09.014
Fonareva I, Oken BS. Physiological and functional consequences of caregiving for relatives with dementia. Int Psychogeriatrics. 2014;26(5):72547. doi:10.1017/S1041610214000039
Tremont G. Family caregiving in dementia. Med Heal R I. 2011;94(2):36–8. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/ PMC3487163/
Pinquart M. Differences between caregivers and noncaregivers in psychological health and physical health : A meta-analysis. Psychol Aging. 2003;18(2):250–67. doi:10.1037/08827974.18.2.250
Schulz BR, Sherwood PR. Physical and mental health effects of family caregiving. AJN. 2008;108(9):237. doi:10.5175/JSWE.2008.773247702 13. Vitaliano PP, Scanlan JM. Is caregiving hazardous to one’s physical health? A meta-analysis. Psychol Bull. 2003;129(6):946–72. doi: 10.1037/00332909.129.6.946
Pinquart M, Sorensen S. Correlates of physical health of informal caregivers: A metaanalysis. Journals Gerontol - Ser B Psychol Sci Soc Sci. 2007;62(2):126–37. doi:10.1093/ geronb/62.2.P126
Miyamoto Y, Tachimori H, Ito H. Formal caregiver burden in dementia: Impact of behavioral and psychological symptoms of dementia and activities of daily living. Geriatr Nurs (Minneap). 2010;31(4):246–53. doi:10.1016/j. gerinurse.2010.01.002
Tan LL, Wong HB, Allen H. The impact of neuropsychiatric symptoms of dementia on distress in family and professional caregivers in Singapore. Int Psychogeriatrics. 2005;17(2):25363. doi:10.1017/S1041610205001523
Chiao C, Wu H, Hsiao C, Professor A, Professor A, Hsiao C-Y. Caregiver burden for informal caregivers of patients with dementia: A systematic review. Int Nurs Rev. 2015;62(110):340–50. doi:10.1111/ inr.12194
Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred reporting items for systematic reviews and metaanalyses: the PRISMA statement. J Clin Epidemiol. 2009;62(10):1006–12. doi:10.7326/0003-4819151-4-200908180-00135
Luchini C, Stubbs B, Solmi M, Veronese N. Assessing the quality of studies in meta-analyses: Advantages and limitations of the Newcastle Ottawa Scale. World J Meta-Analysis. 2017;5(4):80–4. doi: 10.13105/wjma.v5.i4.80
Seehra J, Pandis N, Koletsi D, Fleming PS. Use of quality assessment tools in systematic reviews was varied and inconsistent. J Clin Epidemiol [Internet]. 2016;69:179-184.e5. doi:10.1016/j. jclinepi.2015.06.023
Herzog R, Álvarez-Pasquin MJ, Díaz C, Del Barrio JL, Estrada JM, Gil Á. Are healthcare workers 261 intentions to vaccinate related to their knowledge, beliefs and attitudes? A systematic review. BMC Public Health. 2013;13(1):154. doi:10.1186/14712458-13-154
Wells G, Shea B, O’Connell D, Robertson J, Peterson J, Welch V, et al. The NewcastleOttawa Scale (NOS) for assessing the quality of nonrandomized studies in meta analysis [Internet]. 2011 [cited 2020 Oct 12]. Available from: http:// www.ohri.ca/programs/clinical_epidemiology/ oxford.htm
Islam MM, Iqbal U, Walther B, Atique S, Dubey NK, Nguyen PA, et al. Benzodiazepine use and risk of dementia in the elderly population: A systematic review and meta-analysis. Neuroepidemiology. 2017;47(3–4):181–91. doi:10.1159/000454881
Choo W-Y, Low W-Y, Karina R, Poi PJH, Ebenezer E, Prince MJ. Social support and burden among caregivers of patients with dementia in Malaysia. Asia-Pacific J public Heal. 2003;15(1):23–9. doi:10.1177/101053950301500105
Rosdinom R, Norzarina M, Zanariah M, Ruzanna Z. Sociodemographic profiles of caregivers and their association with burden of care in dementia. Malaysian J Psychiatry. 2011;1–10. Available from: http://www.mjpsychiatry.org/index.php/mjp/ article/viewFile/139/116
Rosdinom R, Zarina MZN, Zanariah MS, Marhani M, Suzaily W. Behavioural and psychological symptoms of dementia, cognitive impairment and caregiver burden in patients with dementia. Prev Med (Baltim) [Internet]. 2013;57:S67–9. Available from: http://www.sciencedirect.com/science/ article/pii/S0091743513000030
NurFatihah O, Rahmah M, Rosnah S. Informal social support and caregiver burden of caregivers of elderly with dementia. IOSR J Humanit Soc Sci. 2013;8(5):68–72. doi:10.9790/0837-0856872
Baharudin AD, Din NC, Subramaniam P, Razali R. The associations between behavioralpsychological symptoms of dementia (BPSD) and coping strategy, burden of care and personality style among low-income caregivers of patients with dementia. BMC Public Health. 2019;19(Suppl 4):1–12. doi:10.1186/s12889-019-6868-0
Chan EWL, Yap PS, Khalaf ZF. Factors associated with high strain in caregivers of Alzheimer ’s disease ( AD ) in Malaysia. Geriatr Nurs (Minneap) [Internet]. 2019;40(4):380–5. doi:10.1016/j. gerinurse.2018.12.009
Zakaria R, Razak AA. The effectiveness of a culturalbased support group for Malay dementia caregivers in Kelantan, Malaysia: a pre-post intervention study. ASEAN J Psychiatry. 2017;18(1):0–0. Available from: https://www.aseanjournalofpsychiatry. org/articles/the-effectiveness-of-a-culturalbasedsupport-group-for-malay-dementia-caregivers-inkelantan-malaysia-a-prepost-interven.pdf
Robinson BC. Validation of a Caregiver StrainIndex. J Gerontol. 1983;38(3):344–8. doi:10.1093/ geronj/38.3.344 32. Zarit SH, Reever KE, Bach-peterson J. Relatives of the impaired elderly : Correlates of feelings of burden. Gerontologist. 1980;20(6):649–55. doi:10.1093/geront/20.6.649 33. Whalen KJ, Buchholz SW. The reliability, validity and feasibility of tools used to screen for caregiver burden: A systematic review. JBI Libr Syst Rev. 2009;7(32):1373–430. Available from: http:// works.bepress.com/kimberly_whalen/7/
George, L. K.; Gwyther, L. P. (1986). Caregiver Weil-Being: A Multidimensional Examination of Family Caregivers of Demented Adults. The Gerontologist, 26(3), 253–259. doi:10.1093/ geront/26.3.253
Shim V, Ng C, I D. Validation of the Malay Version of Zarit Burden Interview (MZBI). Malaysian J Psychiatry [Internet]. 2018;26(2):3–18. Available from: http://www.mjpsychiatry.org/index.php/mjp/ article/view/327
Sallim A Bin, Sayampanathan AA, Cuttilan A, Chun-Man Ho R. Prevalence of Mental Health Disorders Among Caregivers of Patients With Alzheimer Disease. J Am Med Dir Assoc [Internet]. 2015;16(12):1034–41. doi:10.1016/j. jamda.2015.09.007
Chou KR, Chu H, Tseng CL, Lu RB. The Measurement of Caregiver Burden. J Med Sci [Internet]. 2003;23(2):73–82. Available from: http://jms.ndmctsgh.edu.tw/achieves_articles. php?&Search_vol=23&Search_num=2
Bastawrous M. Caregiver burden-A critical discussion. Int J Nurs Stud [Internet]. 2013;50(3):43141. doi:10.1016/j.ijnurstu.2012.10.005
Chan SWC. Family caregiving in dementia: The Asian perspective of a global problem. Dement Geriatr Cogn Disord. 2011;30(6):469–78. doi:10.1159/000322086
Muangpaisan W, Praditsuwan R, Assanasen J, Srinonprasert V, Assantachai P, Intalapaporn S, et al. Caregiver burden and needs of dementia caregivers in Thailand: A cross-sectional study. J Med Assoc Thail. 2010;93(5):601–7. Available from: https:// www.si.mahidol.ac.th/th/publication/2010/Vol93_ No.5_601_3688.pdf
Park M, Sung M, Kim SK, Kim S, Lee DY. Multidimensional determinants of family caregiver burden in Alzheimer ’ s disease. Int Psychogeriatrics. 2015;27(8):1355–64. doi:10.1017/s1041610215000460
Putri YSE. The predictors of caregiver’s burden and depression level in caring elderly people with dementia at community. J Ners. 2013;8(1):88–97.
Wang J, Xiao LD, He GP, Ullah S, De Bellis A. Factors contributing to caregiver burden in dementia in a country without formal caregiver support. Aging Ment Heal. 2014;18(8):986–96. doi: 10.1080/13607863.2014.899976
van der Lee J, Bakker TJEM, Duivenvoorden HJ, Droes R. Multivariate models of subjective caregiver burden in dementia : A systematic review. Ageing Res Rev [Internet]. 2014;15:76–93. doi:10.1016/j.arr.2014.03.003
Sinforiani E, Pasotti C, Chiapella L, Malinverni P, Zucchella C. Differences between physician and caregiver evaluations in Alzheimer’s disease. Funct Neurol. 2010;25(4):205–9. doi:10.1093/eurpub/ ckx187.100
Oedekoven M, Amin-Kotb K, Gellert P, Balke K, Kuhlmey A, Schnitzer S. Caregivers’ burden and education level: does subjective health mediate the association? Eur J Public Health. 2017;27(suppl_3):39–40. doi:10.1093/eurpub/ ckx187.100