Subjective and Objective Caregiver Burden in Parkinson's Disease

  • Kim, Keum-Soon (The Research Institute of Nursing Science, Seoul National University) ;
  • Kim, Bog-Ja (Ulsan University) ;
  • Kim, Kyung-Hee (Chung Ang University) ;
  • Choe, Myoung-Ae (The Research Institute of Nursing Science, Seoul National University) ;
  • Yi, Myung-Sun (The Research Institute of Nursing Science, Seoul National University) ;
  • Hah, Yang-Sook (The Research Institute of Nursing Science, Seoul National University) ;
  • Chung, Sun-Ju (Department of Neurology, Asan Medical Center) ;
  • Kwon, So-Hi (The Research Institute of Nursing Science, Seoul National University)
  • Published : 2007.03.31

Abstract

Purpose. Parkinson's disease (PD) is a common neurodegenerative disorder characterized by motor disabilities and increasing dependence on others for daily life activities with consequent impact on patients' and caregivers' quality of life. The aim of this study was to elucidate the burden on primary caregivers of patients with PD, and identify related factors. Methods. A cross-sectional descriptive study. Seventy-six primary caregivers of PD patients in a neurology out-patient clinic, Seoul, Korea completed structured questionnaires, of which 68 were analyzed. The structured self-report questionnaire included (1) demographic information on the caregivers, (2) information regarding the disease characteristics of the patients, and (3) the subjective and objective caregiver burdens as assessed on Montgomery, Gonyea, & Hooyman's scale. Results. The mean age of the caregivers was 54.56 years, and spouses represented the largest proportion (47.0%). Caregivers of PD patients experienced high levels of burden (mean scores on the subjective and objective burdens were 45.22 and 34.90, respectively), which were comparable to the caregiver burdens in stroke, and higher than the caregiver burdens in general chronic disease. Older caregivers and spousal caregivers experienced significantly higher burdens (p=.004 and p=.019, respectively). A greater motor disability and higher modified Hoehn and Yahr grade were related to higher caregiver burden (p=.001 and p=.018, respectively). Conclusion. Caring for PD patients is associated with a high level of caregiver burden. Therefore, healthcare professionals should identify the burden of caregivers who look after PD patients and develop comprehensive management strategies both for patients and their caregivers.

Keywords

References

  1. Berry, R A., & Murphy, J. F. (1995). Well-being of caregivers of spouses with Parkinson's disease. Clin Nurs Res, 4(4),373-386 https://doi.org/10.1177/105477389500400404
  2. Caap-Ahlgren, M., & Dehlin, O. (2002). Factors of importance to the caregiver burden experienced by family caregivers of Parkinson's disease patients. Aging Clin Exp Res, 14(5),371377
  3. Carter, J. H., Stewart, B. J., Archbold, P. G., Inoue, I., Jaglin, J., Lannon, M., Rost-Ruffner, E., Tennis, M., McDermott, M. P., Amyot, D., Barter, R, Cornelius, L., Demong, C., Dobson, J., Duff, J., Erickson, P., Gardiner, N., Gauger, L., Gray, P., Kanigan, B., Kiryluk, B., Lewis, P., Mistura, K., Malapira, T., & Zoog, K. (1998). Living with a person who has Parkinson's disease: the spouse's perspective by stage of disease. Mov Disord, 13(1), 20-28 https://doi.org/10.1002/mds.870130108
  4. Choi, K. S., & Eun, Y. (2000). A theory construction on the care experience for spouse of patients with chronic illness. J Korean Acad Nurs, 30(1), 122-136 https://doi.org/10.4040/jkan.2000.30.1.122
  5. Davey, C., Wiles, R, Ashburn, A, & Murphy, C. (2004). FaIling in Parkinson's disease: the impact on informal caregivers. Disabil Rehabil, 26(3), 1360-1366 https://doi.org/10.1080/09638280400000195
  6. Dunkin. J. J., & Anderson-Hanley, C. (1998). Dementia caregiver burden: a review of the literature and guidelines for assessment and intervention. Neurology, 51(1), S53-S60
  7. Edwards, N., & Scheetz, P. (2002). Predictors of burden for caregivers of patients with Parkinson's disease. J Neurosci Nurs, 34(4),184-190 https://doi.org/10.1097/01376517-200208000-00003
  8. Goetz, C., Poewe, W., Rascol, O., Sampaio, C., Stebbing, G., Counsell, C., Giladi, N., Holloway, R., Moore, C., Wenning, G., Yahr, M., & Seidl, L. (2004). Movement disorder society task force report on the Hoehn and Yahr Staging Scale: status and recommendations. Mov Disord. 19(9),1020-1028 https://doi.org/10.1002/mds.20213
  9. Greenberg, D. A, Aminoff, M. J., & Simon, R. P. (2005). Clinical Neurology. 6th Ed. New York: McGraw-Hill Medical
  10. Hong, Y. S., Suh, M. J., Kim, K. S., Kim, I. J., Cho, N. O., Choi, H. J., Jung, S. H., & Kim, E. M. (2000). Relations between perceived burden and social support of stroke patient's family caregiver. J Korean Acad Nurs, 30(3), 595-605 https://doi.org/10.4040/jkan.2000.30.3.595
  11. Jost, W. H. (2000). Costs in the treatment of parkinsonism. J Neurol, 247, S31-S33
  12. Kim, S. R, Chung, S. J., Im, J. H., & Lee, M. C. (2005). The caregivers' burden in Parkinson's disease. J Korean Neurol Assoc, 23(3), 335-340
  13. Lee, Y. S. (1993). A Study on the Family Burden of Chronically III Patients at Hospital. Unpublished master's thesis. The Seoul National University, Seoul, Korea
  14. Montgomery, J., Gonyea, J., & Hooyman, N. (1985). Caregiving and the experience of objective and subjective burden. Fam Relat, 34, 19-26 https://doi.org/10.2307/583753
  15. Movement Disorder Society Task Force on Rating Scales for Parkinson's Disease. (2003). The Unified Parkinson's Disease Rating Scale (UPDRS): status and recommendations. Mov Disord, 18(7),738-750 https://doi.org/10.1002/mds.10473
  16. O'Reilly, F., Finnan, F., Allwright, S., Smith, G. D., & Ben-Shlomo, Y. (1996). The effects of caring for a spouse with Parkinson's disease on social, psychological and physical well-being. Br J Gen Pract, 46(410), 507-512
  17. Schrag, A, Hovris, A., Morley, D., Quinn, N., & Jahanshahi, M. (2006). Caregiver-burden in parkinson's disease is closely associated with psychiatric symptoms, falls, and disability. Parkinsonism Relat Disord, 12(1),35-41
  18. Siderowf, A, McDermott, M., Kieburtz, K., Blindaure, K., Plumb, S., & Shoulson, I. (2002). Test-retest reliability of the unified Parkinson's disease rating scale in patients with early Parkinson's disease: results from a multicenter clinical trial. Mov Disord, 17(4),758-763 https://doi.org/10.1002/mds.10011