J Korean Acad Nurs.  2015 Apr;45(2):202-210. 10.4040/jkan.2015.45.2.202.

Depression and Caregiving Burden in Families of Patients with Amyotrophic Lateral Sclerosis

• Oh J
• An JW
• Oh KW
• Oh SI
• Kim JA
• Kim SH
• Lee JS

• KMID: 2359858
• DOI: http://doi.org/10.4040/jkan.2015.45.2.202

Abstract

PURPOSE
The purpose of this study was to describe depression, caregiving burden and the correlation of the two variables in the families of patients with amyotrophic lateral sclerosis (ALS) and to clarify factors predicting caregiving burden.
METHODS
A descriptive and cross-sectional study was conducted with 139 family members who provided care to patients with ALS. The characteristics of patients and families, Korean-Beck Depression Inventory (K-BDI), Korean version of Zarit Burden Interview (K-ZBI) and Korean-Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised (K-ALSFRS-R) were used as study measures.
RESULTS
The mean score for K-BDI was 19.39 out of 63 suggesting sub-clinical depression and 38.2% of the family members exhibited depression. The mean score for K-ZBI was 66.03 out of 88. The predictors for K-ZBI were K-BDI, age of family member, length of time spent per day in caring, relationship to patient and K-ALSFRS-R.
CONCLUSION
The results of this study suggest that levels of depression and caregiving burden are high among family members caring for patients with ALS. As depression is associated with caregiving burden, screening and emotional supports should be provided to reduce the burden of care for these family. Support programs to alleviate the care burden are also needed, considering family demographics, time per day in caring giving and K-ALSFRS-R.

Keyword

Dependency burden; Caregivers; Depression; Amyotrophic lateral sclerosis

MeSH Terms

Adult
Aged
Amyotrophic Lateral Sclerosis/pathology
Caregivers/*psychology
Cross-Sectional Studies
Depression/etiology/*psychology
Family
Female
Humans
Male
Middle Aged
Psychiatric Status Rating Scales
Quality of Life
Surveys and Questionnaires

Reference

1. Bae JS, Hong YH, Baek W, Sohn EH, Cho JY, Kim BJ, et al. Current status of the diagnosis and management of amyotrophic lateral sclerosis in Korea: A multi-center cross-sectional study. J Clin Neurol. 2012; 8(4):293–300. DOI: 10.3988/jcn.2012.8.4.293.

2. Andersen PM, Abrahams S, Borasio GD, de Carvalho M, Chio A, Van Damme P, et al. EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS)-revised report of an EFNS task force. Eur J Neurol. 2012; 19(3):360–375. DOI: 10.1111/j.1468-1331.2011.03501.x.

3. Sohn EH, Kim BJ, Kim JK, Bae JS, Baek W, Suh BC, et al. Establishment and perspective of the Korean ALS registry. Korean J Clin Neurophysiol. 2011; 13(2):71–79.

4. Logroscino G, Traynor BJ, Hardiman O, Chiò A, Couratier P, Mitchell JD, et al. Descriptive epidemiology of amyotrophic lateral sclerosis: New evidence and unsolved issues. J Neurol Neurosurg Psychiatry. 2008; 79(1):6–11. DOI: 10.1136/jnnp.2006.104828.

5. Neudert C, Oliver D, Wasner M, Borasio GD. The course of the terminal phase in patients with amyotrophic lateral sclerosis. J Neurol. 2001; 248(7):612–616.

6. Chiò A, Gauthier A, Vignola A, Calvo A, Ghiglione P, Cavallo E, et al. Caregiver time use in ALS. Neurology. 2006; 67(5):902–904. DOI: 10.1212/01.wnl.0000233840.41688.df.

7. Chappell NL, Dlitt BH, Hollander MJ, Miller JA, McWilliam C. Comparative costs of home care and residential care. Gerontologist. 2004; 44(3):389–400.

8. Park KH, Kim HY, Nam YH, Kim J, Joo IS, Sung JJ, et al. Preliminary study on clinical characteristics and caregivers' burden of Korean patients with amyotrophic lateral sclerosis; Survey based on database of Korea ALS association. J Korean Neurol Assoc. 2006; 24(3):252–259.

9. Bede P, Oliver D, Stodart J, van den Berg L, Simmons Z, O Brannagáin D, et al. Palliative care in amyotrophic lateral sclerosis: A review of current international guidelines and initiatives. J Neurol Neurosurg Psychiatry. 2011; 82(4):413–418. DOI: 10.1136/jnnp.2010.232637.

10. Aoun SM, Bentley B, Funk L, Toye C, Grande G, Stajduhar KJ. A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions. Palliat Med. 2013; 27(5):437–446. DOI: 10.1177/0269216312455729.

11. Miyashita M, Narita Y, Sakamoto A, Kawada N, Akiyama M, Kayama M, et al. Care burden and depression in caregivers caring for patients with intractable neurological diseases at home in Japan. J Neurol Sci. 2009; 276(1-2):148–152. DOI: 10.1016/j.jns.2008.09.022.

12. Qutub K, Lacomis D, Albert SM, Feingold E. Life factors affecting depression and burden in amyotrophic lateral sclerosis caregivers. Amyotroph Lateral Scler Frontotemporal Degener. 2014; 15(3-4):292–297. DOI: 10.3109/21678421.2014.886699.

13. Yun MH, Choi-Kwon S. Quality of life and the factors related to family caregivers caring for those with amyotrophic lateral sclerosis. Perspect Nurs Sci. 2011; 8(1):62–72.

14. Kim MS, Shin HI, Min Y, Kim JY, Kim JS. Correlation between severe ALS patient-caregiver couples' characteristics and caregivers' health related quality of life. J Korean Acad Nurs. 2011; 41(3):354–363. DOI: 10.4040/jkan.2011.41.3.354.

15. Lillo P, Mioshi E, Hodges JR. Caregiver burden in amyotrophic lateral sclerosis is more dependent on patients' behavioral changes than physical disability: A comparative study. BMC Neurol. 2012; 12:156. DOI: 10.1186/1471-2377-12-156.

16. Brooks BR, Miller RG, Swash M, Munsat TL. El Escorial revisited: Revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000; 1(5):293–299.

17. Kim HY, Park KH, Koh SH, Lee SC, Nam YH, Kim J, et al. Korean version of amyotrophic lateral sclerosis functional rating scale-revised: A pilot study on the reliability and validity. J Korean Neurol Assoc. 2007; 25(2):149–154.

18. Rhee MK, Lee YH, Park SH, Sohn CH, Chung YC, Hong SK, et al. A standardization study of Beck depression inventory I: Korean version (K-BDI): Reliability and factor analysis. Korean J Psychopathol. 1995; 4(1):77–95.

19. Lee HS, Kim DK, Ko HJ, Ku HM, Kwon EJ, Kim JH. Measurement of stress in the caregivers of dementia patients: Reliability and validity of the revised-memory and behavior problem checklist and the burden interview. Korean J Clin Psychol. 2004; 23(4):1029–1050.

20. Pagnini F, Rossi G, Lunetta C, Banfi P, Castelnuovo G, Corbo M, et al. Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis. Psychol Health Med. 2010; 15(6):685–693. DOI: 10.1080/13548506.2010.507773.

21. Pagnini F, Lunetta C, Rossi G, Banfi P, Gorni K, Cellotto N, et al. Existential well-being and spirituality of individuals with amyotrophic lateral sclerosis is related to psychological well-being of their caregivers. Amyotroph Lateral Scler. 2011; 12(2):105–108. DOI: 10.3109/17482968.2010.502941.

22. Rabkin JG, Wagner GJ, Del Bene M. Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosom Med. 2000; 62(2):271–279.

23. Rabkin JG, Albert SM, Rowland LP, Mitsumoto H. How common is depression among ALS caregivers? A longitudinal study. Amyotroph Lateral Scler. 2009; 10(5-6):448–455. DOI: 10.1080/17482960802459889.

24. Chiò A, Gauthier A, Calvo A, Ghiglione P, Mutani R. Caregiver burden and patients' perception of being a burden in ALS. Neurology. 2005; 64(10):1780–1782. DOI: 10.1212/01.wnl.0000162034.06268.37.

25. Rhee YS, Yun YH, Park S, Shin DO, Lee KM, Yoo HJ, et al. Depression in family caregivers of cancer patients: The feeling of burden as a predictor of depression. J Clin Oncol. 2008; 26(36):5890–5895. DOI: 10.1200/jco.2007.15.3957.

26. Choi-Kwon S, Kim HS, Kwon SU, Kim JS. Factors affecting the burden on caregivers of stroke survivors in South Korea. Arch Phys Med Rehabil. 2005; 86(5):1043–1048. DOI: 10.1016/j.apmr.2004.09.013.

27. Kim SR, Chung SJ, Im JH, Lee MC. The caregivers' burden in Parkinson's disease. J Korean Neurol Assoc. 2005; 23(3):335–340.

28. Oh J, An JW, Oh S-i, Oh KW, Kim JA, Lee JS, et al. Socioeconomic costs of amyotrophic lateral sclerosis according to staging system. Amyotroph Lateral Scler Frontotemporal Degener. 2015; 02. 03. [Epub ahead of print]. DOI: 10.3109/21678421.2014.999791.

29. Gauthier A, Vignola A, Calvo A, Cavallo E, Moglia C, Sellitti L, et al. A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Neurology. 2007; 68(12):923–926. DOI: 10.1212/01.wnl.0000257093.53430.a8.

30. National Health Insurance. Long term care insurance [Internet]. Seoul: Author;2013. cited 2014 September 1. Available from:http://www.longtermcare.or.kr/portal/longtermcare/sub02_03.jsp.