Skip to main content Skip to main navigation menu Skip to site footer
Articles
Published: 2024-08-31

The experiences of adult children caring for a parent with Korsakoff’s syndrome

Professional Wellness Management, Weddington, North Carolina, United States
Behavioral Health Sciences, University of California, Berkeley Extension, California, United States
Generic Qualitative, Korsakoff’s Syndrome, Adult Child, Caregiver, Alcohol Use Disorder, United States

Abstract

Background: Korsakoff’s syndrome (KS) is a debilitating psychoneurological disorder that can occur in adults with alcohol use disorder (AUD). People with KS experience a sudden onset of symptoms including confabulation, anterograde and retrograde amnesias, apathy, issues with vision and gait, and lack of insight. Frequently an adult child of the parent with alcohol-induced KS becomes the caregiver, regardless of the status or quality of the relationship with their parent. While there is a rich literature base in the areas of adult children of parents with AUD and caregiving, there are no studies that have explored the experiences of adult children caring for a parent with alcohol-induced KS. This study aimed to explore the experiences of adult children who provide care for a parent or parental figure suffering from alcohol-induced Korsakoff syndrome (KS).

Method: This study used a generic qualitative approach with thematic analysis using both in person and web-based video interview methods and field notes to address this gap in the literature. Eight individuals participated in the study, men (n=2) and women (n=6), with participants ranging in age from 31 to 43 years (average age 37 years).

Results: Five themes emerged: addiction and the adult child, experiencing caregiver burden, experiencing a variety of emotions, professional healthcare experiences, and observations of symptoms. These themes emerged over seven anchor events in their caregiving experiences: interactions with their parent pre-diagnosis, parent’s medical emergency, hospitalization, diagnosis, housing, legal, and financial.

Conclusion: The results provide a foundation for future research in the areas of KS, caregiving, and adult children of parents with AUD. They also provide a basis to inform the development of interventions with this population and demonstrate a need for more awareness of KS among healthcare professionals.

 



Downloads

Download data is not yet available.

References

  1. Donnelly A. Wernicke-Korsakoff syndrome: recognition and treatment. Nurs Stand. 2017 Mar 29;31(31):46-53. https://doi.org/10.7748/ns.2017.e10440 PMID: 28351256.
  2. Sinha S, Kataria A, Kolla BP, Thusius N., Loukianova LL. Wernicke encephalopathy: clinical pearls. Mayo Clin Proc. 2019 Jun;94(6):1065-1072. https://doi.org/10.1016/j.mayocp.2019.02.018.
  3. Arts NJM, Walvoort SJW, Kessels RPC. Korsakoff’s syndrome: a critical review. Neuropsychiatr Dis Treat. 2017;13:2875-2890. https://doi.org/10.2147/NDT.S130078.
  4. Thomson AD, Guerrini I, Marshall EJ. The evolution and treatment of Korsakoff's syndrome. Neuropsychol Rev. 2012;22, 81–92. https://doi.org/10.1007/s11065-012-9196-z.
  5. Fonareva I, Oken BS. Physiological and functional consequences of caregiving for relatives with dementia. International Psychogeriatrics. 2014;26(5):725–47. https://doi.org/10.1017/S1041610214000039
  6. Gonzalez EW, Polansky M, Lippa CF, Walker D, Feng D. Family caregivers at risk: who are they? Issues Ment Health Nurs. 2011;32(8):528-36. https://doi.org/10.3109/01612840.2011.573123.
  7. Kim,Y, Schulz, R. Family caregivers’strains: comparative analysis of cancer caregiving with dementia, diabetes, and frail elderly caregiving. Journal of Aging and Health, 2008;20(5), 483-503. https://doi.org/10.1177/0898264308317533.
  8. Kim H, Chang M, Rose K., Kim S. Predictors of caregiver burden in individuals with dementia. Journal of Advanced Nursing. 2011;68(4), 846-855. https://doi.org/10.1111/j.1365-2648.2011.05787.x.
  9. Pot AM, Deeg DJH, Van Dyk R. Psychological well-being of informal caregivers of elderly people with dementia: changes over time Aging & Mental Health. 1997;1:3, 261-268, DOI: 10.1080/13607869757164.
  10. Wood S, Tirone S. The leisure of women caring for people harmfully involved with alcohol, drugs, and gambling. Journal of Leisure Research. 2013;45:5, 583-601, https://doi.org/10.18666/jlr-2013-v45-i5-4364
  11. Orford J, Velleman R, Copello A, Templeton L, Ibanga A. The experiences of affected family members: a summary of two decades of qualitative research. Drugs: Education, Prevention and Policy. 2010;17:sup1, 44-62, https://doi.org/10.3109/09687637.2010.514192
  12. Slaunwhite AK, Ronis ST, Sun Y, Peters PA. The emotional health and well-being of Canadians who care for persons with mental health or addictions problems. Health and Social Care in the Community. 2017;25(3), 840-847. https://doi.org/10.1111/hsc.12366.
  13. Hodges M, Copello A. “How do I tell my children about what my mum’s like?” conflict dilemma in experiences of adult family members caring for a problem-drinking parent. Families, Relationships, and Societies. 2015;4(1), 87-101. https://doi.org/10.1332/204674314S13951456077308.
  14. Gerridzen IJ, Goossensen MA. Patients with Korsakoff syndrome in nursing home: characteristics, comorbidity, and use of psychotropic drugs. International Psychogeriatrics. 2014;26(1):115–21. https://doi.org/10.1017/S1041610213001543 .
  15. Percy WH, Kostere K, Kostere, S. Generic qualitative research in psychology. The Qualitative Report. 2015; 20(2), 76-85. https://doi.org/10.46743/2160-3715/2015.2097
  16. Cook SK, Snellings L, Cohen SA. Socioeconomic and demographic factors modify observed relationship between caregiving intensity and three dimensions of quality of life in informal adult caregivers. Health Qual Life Outcomes. 2018, 16(1), 169-180. https://doi.org/10.1186/s12955-018-0996-6.
  17. Alford KM. Family roles, alcoholism, and family dysfunction. Journal of Mental Health Counseling. 1998;20(30), 250-260. https://search.proquest.com/openview/c4fbf6467addf194cbde411b577b7227/1?pq-origsite=gscholar&cbl=47399.
  18. Cook L. Perceived conflict, sibling position, cut-off, and multigenerational transmission in the family of origin of chemically dependent persons: an application of bowen family systems theory. Journal of Addictions Nursing. 2007;18(3):p 131-140. https://doi.org/10.1080/10884600701500495
  19. Grant BF. Estimates of US children exposed to alcohol abuse and dependence in the family. Am J Public Health. 2000 Jan;90(1):112-5. doi: 10.2105/ajph.90.1.112. PMID: 10630147; PMCID: PMC1446111
  20. Hall CW, Webster RE. Multiple stressors and adjustment among adult children of alcoholics. Addiction Research & Theory. 2207; 15(4), 425-434. https://doi.org/10.1080/16066350701261865 .
  21. Long L, Long B, Koyfman, A. The emergency medicine management of severe alcohol withdrawal. Am Jour Emerg Med. 2017;35(7), 1005-1011. https://doi.org/10.1016/j.ajem.2017.02.002.
  22. Van Dam MJ, van Meijel B, Postma A, Oudman E. Health problems and care needs in patients with Korsakoff’s syndrome: a systematic review. J Psych Mental Health Nursing. 2020;27(4), 460-481. https://doi.org/10.1111/jpm.12587.
  23. Gerridzen IJ, Hertogh CM, Joling KJ, et al. Caregivers’ perspectives on good care for nursing home residents with Korsakoff syndrome. Nursing Ethics. 2021;28(3):358-371. https://doi.org/10.1177/0969733020921507
  24. Li L, Lee Y. Caregiving choice and caregiver-receiver relation: effects on psychological well-being of family caregivers in Canada. Canadian Journal on Aging / La Revue canadienne du vieillissement. 2020;39(4):634–46. https://doi.org/10.1017/S0714980819000825
  25. Schulz R, Beach SR, Cook TB, Martire LM, Tomlinson JM, Monin JK. Predictors and consequences of perceived lack of choice in becoming an informal caregiver. Aging in Mental Health. 2012;16(6), 712-721 https://doi.org/10.1080/13607863.2011.651439
  26. Settley C. The physical and psychological wellbeing of caregivers in individuals suffering from substance addiction. Archives of Psychiatric Nursing. 2020;34(3). 107-109. https://doi.org/10.1016/j.apnu.2020.03.007
  27. van den Hooff S. Transcending responsibility: a way to justify beneficial coercion of patients suffering from Korsakoff’s syndrome? In: Gather J, Henking T, Nossek A, Vollman J, editors. Beneficial coercion in psychiatry: foundations and challenges. Munster: Mentis; 2017. pp. 221-236. https://doi.org/10.30965/9783957438157_016
  28. Haalboom R, van Aken L, Walvoort SJW, Egger JIM, Kessels RPC. Preserved intellectual functioning in Korsakoff’s syndrome? actual and premorbid intelligence in patients with major or mild alcohol-related cognitive disorder. Journal of Substance Use. 2019; 24(5), 532-538. https://doi.org/10.1080/14659891.2019.1619101
  29. Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stress process: an overview of concepts and their measures. Gerontologist. 1990; 30(5), 583-594. https://doi.org/10.1093/geront/30.5.583
  30. Haverfield MC, Theiss JA. A theme analysis of experiences reported by adult children of alcoholics in online support forums. Journal of Family Studies. 2014; 20(2), 166-183. https://doi.org/10.1080/13229400.2014.11082004
  31. Garg R, Gupta A, Kundal D. Comparison of impact of family stigma on quality of life among inpatients with alcohol and opioid use disorder. Industrial Psychiatry Journal. 2019; 28(2), 278-285. https://doi.org/10.4103/ipj.ipj_83_19
  32. Rafiq M, Sadiq R. Caregiver stress, perceived stigma and mental health in female family members of drug addicts: correlational study. J Pak Med Assoc. 2019 Sep;69(9):1300-1303. PMID: 31511715.
  33. Järvinen M, Bloch C. Sympathy and misery in families with drinking problems. Acta Sociologica. 2017; 60(1), 75-88. https://doi.org/10.1177/0001699316652210
  34. Bonnelle V, Manohar S, Behrens T, Husain M. Individual differences in premotor brain systems underlie behavioral apathy. Cerebral Cortex. 2016; 26(2), 817-819. https://doi.org/10.1093/cercor/bhv247
  35. El Haj M, Nandrino J-L. Feedback and repetition as a tool to rehabilitate time perception in Korsakoff’s syndrome: a case study. Journal of Systems and Integrative Neuroscience. 2016; 3(1), 1-5. https://doi.org/10.15761/JSIN.1000145
  36. Wijnia JW, van de Wetering BJ, Zwart E, Nieuwenhuis KGA, Goossensen MA. Evolution of Wernicke-Korsakoff syndrome in self-neglecting alcoholics: preliminary results of relation with Wernicke-delirium and diabetes mellitus. The American Journal on Addictions. 2012; 21, 104-110. https://doi.org/10.1111/j.1521-0391.2011.00199.x.
  37. van den Hooff S, Goossensen A. Conflicting conceptions of autonomy: experiences of family carers with involuntary admissions of their relatives. Ethics & Social Welfare. 2015; 9(1), 64-81. https://doi.org/10.1080/17496535.2014.937450
  38. Tough H, Brinkhof MW, Siegrist J, Fekete C. Subjective caregiver burden and caregiver satisfaction: the role of partner relationship quality and reciprocity. Archives of Physical Medicine and Rehabilitation. 2017; 98(10), 2042-2051. https://doi.org/10.1016/j.apmr.2017.02.009
  39. Cheng S-T. Dementia caregiver burden: a research update and critical analysis. Current Psychiatry Reports. 2017; 19(64), 1-8. https://doi.org/10.1007/s11920-017-0818-2
  40. Gerridzen IJ, Moerman-van den Brink WG, Depla MF, Verschuur EML, Veenhuizen RB, van der Wouden JC, Hertogh CMPM,Joling KJ. Prevalence and severity of behavioural symptoms in patients with Korsakoff syndrome and other alcohol-related cognitive disorders: a systematic review. Int J Geriatr Psychiatry. 2017;32: 256–273. PMID: 27918121 DOI: 10.1002/gps.4636
  41. Oudman E, Oey MJ, Batjes D, van Dam M, van Dorp M, Postma A, Wijnia JW. Wernicke-Korsakoff syndrome diagnostics and rehabilitation in the post-acute phase. Addiction Neuroscience. 2022; 4. https://doi.org/10.1016/j.addicn.2022.100043
  42. Drost R, Postma A, Oudman E. Cognitive and affective theory of mind in Korsakoff’s syndrome. Acta Neuropsychiatrica, 2019; 31(3), 128-134. https://doi.org/10.1017/nev.2018.35.
  43. Blandin K, Pepin R. Dementia grief: a theoretical model of a unique grief experience. Dementia. 2017; 16(1), 67-78. https://doi.org/10.1177/1471301215581081
  44. Labrum T. Caregiving for relatives with psychiatric disorders vs. co-occurring psychiatric and substance use disorders. Psychiatric Quarterly. 2018; 89, 631-644. https://doi.org/10.1007/s11126-017-9557-0
  45. Pereira HR, Botelho MAR. Sudden informal caregivers: the lived experiences of informal caregivers after an unexpected event. Journal of Clinical Nursing. 2011; 20(17), 2448-2457. https://doi.org/10.1111/j.1365-2702.2010.03644.x
  46. Tyo MB, McCurry MK. An integrative review of measuring caregiver burden in substance use disorder. Nursing Research. 2020; 69(5), 391-398. https://doi.org/10.1097/NNR.0000000000000442
  47. Rossetto KR. Qualitative research interviews: assessing the therapeutic value and challenges. Journal of Social and Personal Relationships. 2014;31(4), 482-489. https://doi.org/10.1177/0265407514522892
  48. Sanvisens A, Zuluaga P, Fuster D, Rivas I, Tor J, Marcos M, Chamorro AJ, Muga R. Long-term mortality of patients with an alcohol-related Wernicke-Korsakoff syndrome. Alcohol and Alcoholism. 2017; 52(4), 466-471. https://doi.org/10.1093/alcalc/agx013
  49. Salmon DP, Butters N. The etiology and neuropathology of alcoholic Korsakoff’s syndrome: some evidence for the role of the basal forebrain. In: Galanter M, editor. New York: Springer. Recent developments in alcoholism (vol. 5); 1987. pp. 27-58 https://doi.org/10.1007/978-1-4899-1684-6_2
  50. Sanchez C, Grzenda A, Varias A, Widge AS, Carpenter LL, McDonald WM, Nemeroff CB, Kalin NH, Martin G, Tohen M, Filippou-Frye M, Ramsey D, Linos E, Mangurian C, Rodriguez CI. Social media recruitment for mental health research: a systematic review. Comprehensive Psychiatry. 2020. https://doi.org/10.1016/j.comppsych.2020.152197
  51. Järvinen M. Understanding addiction: adult children of alcoholics describing their parents’ drinking problems. Journal of Family Issues. 2015; 36(6), 805-825. https://doi.org/10.1177/0192513S13513027
  52. Isenberg-Grzeda E, Kutner HE, Nicolson SE. Wernicke-Korsakoff syndrome: under-recognized and under-treated. Psychosomatics. 2012; 53(6), 507-516. https://doi.org/10.1016/j.psym.2012.04.008
  53. Burton-Chase AM, Parker WM, Hennig K, Sisson F, Buzzone LL. The use of social media to recruit participants with rare conditions: Lynch syndrome as an example. JMIR Research Protocols. 2017; 6(1), e12. https://doi.org/10.2196/resprot.6066
  54. Werner A, Malterud K. Children of parents with alcohol problems performing normality: a qualitative interview study about unmet needs for professional support. International Journal of Qualitative Studies on Health and Well-being. 2016; 11(1), 1-11. https://doi.org/10.3402/qhw.v11.30673
  55. Iacono VL, Symonds P, Brown DHK. Skype as a tool for qualitative research interviews. Sociological Research Online. 2016; 21(2), 103-117. https://doi.org/10.5153/sro.3952
  56. Ruppel EK, Gross C, Stoll A, Peck BS, Allen M, Kim S-Y. Reflecting on connecting: meta-analysis of differences between computer-mediated and face-to-face self-disclosure. Journal of Computer-Mediated Communication. 2017; 22(1), 18-34. https://doi.org/10.1111/jcc4.12179
  57. Oldenkamp M, Hagedoorn M, Slaets J, Stolk R, Wittek R, Smidt N. Subjective burden among spousal and adult-child informal caregivers of older adults: results from a longitudinal cohort study. BMC Geriatrics. 2016; 16(208), 1-11. https://doi.org/10.1186/s12877-016-0387-y
  58. Rigby T, Ashwill RT, Johnson DK, Galvin JE. Differences in the experiences in caregiving between spouse and adult child caregivers in dementia with Lewy bodies. Innovation in Aging. 2019; 3(3), 1-15. https://doi.org/10.1093/geroni/igz027


How to Cite

1.
Auslander J, Piotrowski N. The experiences of adult children caring for a parent with Korsakoff’s syndrome . jidhealth [Internet]. 2024 Aug. 31 [cited 2024 Dec. 14];7(4):1114-22. Available from: https://jidhealth.com/index.php/jidhealth/article/view/356