Association between Affiliate Stigma and Psychological Well-being among Caregivers of Patients with Dementia: A Quantitative Report

Authors

  • Mohammed Rasheedan Ellin Faculty of Medicine, Universiti Malaya 50603 Kuala Lumpur, Federal Territory of Kuala Lumpur, Malaysia https://orcid.org/0000-0002-2219-1288
  • Vimala Ramoo Faculty of Medicine, Universiti Malaya 50603 Kuala Lumpur, Federal Territory of Kuala Lumpur, Malaysia
  • Nor Aziyan Yahaya Faculty of Medicine, Universiti Malaya 50603 Kuala Lumpur, Federal Territory of Kuala Lumpur, Malaysia
  • Tan Maw Pin Faculty of Medicine, Universiti Malaya 50603 Kuala Lumpur, Federal Territory of Kuala Lumpur, Malaysia ; Ageing and Age-Associated Disorders Research Group, Health and Wellbeing Research Cluster, Universiti Malaya 50603 Kuala Lumpur, Federal Territory of Kuala Lumpur, Malaysia

DOI:

https://doi.org/10.31674/mjn.2023.v14i04.014

Abstract

Background: The psychological health of caregivers can have a significant impact on the health of individuals with disabilities. People with disabilities whose caregivers experience depression or lack effective coping mechanisms are likely to experience psychological stress. As a result, the health of caregivers is one of the most significant risk factors for placing a caregiver in an institution. Aim: This study investigates the relationship between affiliate stigma and psychological well-being among caregivers of patients with dementia. Methods: Consecutive caregivers were recruited from a clinic at a teaching hospital and a dementia care centre. Affiliate stigma was measured using the 21-item Affiliate Stigma Scale, and caregivers' psychological well-being was measured using the Scale of Psychological Well-Being. A linear regression model with affiliate stigma was used to estimate the associations. Results: Among the 178 recruited caregivers, income and gender were significantly associated with affiliate stigma, while gender, caregiving duration, and dementia stage were significantly associated with psychological well-being. Affiliate stigma showed a significant negative relationship with psychological well-being. Affiliate stigma was identified as the strongest predictor, which explains 54.3% of the variance in psychological well-being. Conclusion: The negative association between affiliate stigma and psychological well-being reinforces the need for awareness programs aimed at decreasing public stigma towards caregivers of people living with dementia.

Keywords:

Affiliate Stigma, Caregivers, Caregiving, Dementia, Stress

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References

Abojabel, H., & Werner, P. (2019). Exploring Family Stigma Among Caregivers of Persons with Alzheimer's Disease: The Experiences of Israeli-Arab Caregivers. Dementia, 18(1), 391-408. https://doi.org/10.1177/1471301216673920

Avdikou, K., Stefanatos, C., Tsatali, M., Gouva, M., & Tsolaki, M. (2019). The Role of Gender in Shame, Hostility, and Aggression Experienced by Caregivers for Patients with Dementia. American Journal of Alzheimer's Disease & Other Dementias®, 34(4), 231-235. https://doi.org/10.1177/1533317518802458

Baharudin, A. D., Din, N. C., Subramaniam, P., & Razali, R. (2019). The Associations between Behavioral-Psychological Symptoms of Dementia (BPSD) and Coping Strategy, Burden of Care and Personality Style among Low-Income Caregivers of Patients with Dementia. BMC Public Health, 19(4), 1-12. https://doi.org/10.1186/s12889-019-6868-0

Chan, C. M., Ong, M. J. Y., Zakaria, A. A., Visusasam, M. M., Ali, M. F., Jamil, T. R., ... & Abdul Aziz, A. F. (2022). Assessment of Dementia Knowledge and its Associated Factors among Final Year Medical Undergraduates In Selected Universities Across Malaysia. BMC Geriatrics, 22(1), 1-10. https://doi.org/10.1186/s12877-022-03148-7

Chang, C. C., Su, J. A., & Lin, C. Y. (2016). Using The Affiliate Stigma Scale With Caregivers of People with Dementia: Psychometric Evaluation. Alzheimer's Research & Therapy, 8(1), 1-8. https://doi.org/10.1186/s13195-016-0213-y

Department of Statistics, M. (2020). Current Population Estimates, Malaysia, 2020. https://www.dosm.gov.my/v1/index.php?r=column/cthemeByCat&cat=155&bul_id=OVByWjg5YkQ3MWFZRTN5bDJiaEVhZz09&menu_id=L0pheU43NWJwRWVSZklWdzQ4TlhUUT09

Devi, F., Yuan, Q., Wang, P., Tan, G. T. H., Roshan Goveas, R., Ng, L. L., ... & Subramaniam, M. (2020). Positive Aspect of Caregiving among Primary Informal Dementia Caregivers In Singapore. PLoS One, 15(8), e0237677. https://doi.org/10.1371/journal.pone.0237677

Ebrahim, O. S., Al-Attar, G. S., Gabra, R. H., & Osman, D. M. (2020). Stigma and burden of mental illness and their correlates among family caregivers of mentally ill patients. Journal of the Egyptian Public Health Association, 95(1), 1-9. https://doi.org/10.1186/s42506-020-00059-6

Ganapathy, S. S., Sooryanarayana, R., Ahmad, N. A., Jamaluddin, R., Abd Razak, M. A., Tan, M. P., ... & Ibrahim, N. (2020). Prevalence of dementia and quality of life of caregivers of people living with dementia in Malaysia. Geriatrics & Gerontology International, 20, 16-20. https://doi.org/10.1111/ggi.14031

Hansen, B., Szaflarski, M., Bebin, E. M., & Szaflarski, J. P. (2018). Affiliate stigma and caregiver burden in intractable epilepsy. Epilepsy & Behavior, 85, 1-6. https://doi.org/https://doi.org/10.1016/j.yebeh.2018.05.028

Hossain, M. Z., & Khan, H. T. (2019). Dementia in the bangladeshi diaspora in england: a qualitative study of the myths and stigmas about dementia. Journal of Evaluation in Clinical Practice, 25(5), 769-778. https://doi.org/10.1111/jep.13117

Javed, A., Lee, C., Zakaria, H., Buenaventura, R. D., Cetkovich-Bakmas, M., Duailibi, K., ... & Azeem, M. W. (2021). Reducing the stigma of mental health disorders with a focus on low-and middle-income countries. Asian Journal of Psychiatry, 58, 102601. https://doi.org/https://doi.org/10.1016/j.ajp.2021.102601

John Hopkins Medicine. (2020). What Is A Caregiver? https://www.hopkinsmedicine.org/about/community_health/johns-hopkins bayview/services/called_to_care/what_is_a_caregiver.html

Kahn, P. V., Wishart, H. A., Randolph, J. S., & Santulli, R. B. (2016). Caregiver stigma and burden in memory disorders: an evaluation of the effects of caregiver type and gender. Current Gerontology and Geriatrics Research, 2016. https://doi.org/10.1155/2016/8316045

Kim, S., Eccleston, C., Klekociuk, S., Cook, P. S., & Doherty, K. (2022). Development and psychometric evaluation of the dementia public stigma scale. International Journal of Geriatric Psychiatry, 37(2). https://doi.org/10.1002/gps.5672

Leonard, W. (2017). Complications of Dementia. Healthline. https://www.healthline.com/health/dementia-complications#general-complications

Lethin, C., Renom-Guiteras, A., Zwakhalen, S., Soto-Martin, M., Saks, K., Zabalegui, A., ... & Karlsson, S. (2017). Psychological well-being over time among informal caregivers caring for persons with dementia living at home. Aging & Mental Health, 21(11), 1138-1146. https://doi.org/10.1080/13607863.2016.1211621

Mak, W. W., & Cheung, R. Y. (2008a). Affiliate stigma among caregivers of people with intellectual disability or mental illness. Journal of Applied Research in Intellectual Disabilities, 21(6), 532-545. https://doi.org/10.1111/j.1468-3148.2008.00426.x

Mak, W. W., & Cheung, R. Y. (2008b). Affiliate stigma among caregivers of people with intellectual disability or mental illness. Journal of Applied Research in Intellectual Disabilities, 21(6), 532-545. https://doi.org/10.1111/j.1468-3148.2008.00426.x

Mehta, K. K., & Ko, H. (2004). Filial piety revisited in the context of modernizing asian societies. Geriatrics & Gerontology International, 4, s77-s78. https://doi.org/https://doi.org/10.1111/j.1447-0594.2004.00157.x

Parveen, S., Smith, S. J., Sass, C., Oyebode, J. R., Capstick, A., Dennison, A., & Surr, C. A. (2021). Impact of dementia education and training on health and social care staff knowledge, attitudes and confidence: a cross-sectional study. BMJ Open, 11(1), e039939. https://doi.org/10.1136/bmjopen-2020-039939

Seow, H., Bainbridge, D., Bryant, D., Guthrie, D., Urowitz, S., Zwicker, V., & Marshall, D. (2016). The caregivervoice survey: a pilot study surveying bereaved caregivers to measure the caregiver and patient experience at end of life. Journal of Palliative Medicine, 19(7), 712-719. https://doi.org/10.1089/jpm.2015.0366

Sen, A. (2018). Collective Choice and Social Welfare. Harvard University Press.

Su, J. A., & Chang, C. C. (2020). Association between family caregiver burden and affiliate stigma in the families of people with dementia. International Journal of Environmental Research and Public Health, 17(8), 2772. https://doi.org/10.3390/ijerph17082772

Vun, I. J., Cheah, W. L., & Helmy, H. (2020). Quality of life and its associated factors among caregivers of patients with dementia--a crosssectional study in kuching, sarawak, malaysia. Neurology Asia, 25(2). https://ezaccess.library.uitm.edu.my/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=144288151&site=ehost-live&scope=site

Van den Bossche, P., & Schoenmakers, B. (2022). The impact of dementia's affiliate stigma on the mental health of relatives: a cross section survey. Frontiers in Psychology, 12, 6615.

Wang, S., Shan, Q., Cheung, D. S. K., Xu, X., Leung, I. S. H., & Leung, A. Y. M. (2022). Influence of dementia literacy and caregiving appraisal on the psychological wellbeing of informal caregivers of people with dementia: a cross-sectional study. Frontiers in Medicine, 2607. https://doi.org/10.3389/fmed.2022.971481

World Health Organization. (2018a). Ageing and Health. https://www.who.int/news-room/fact-sheets/detail/ageing-and-health

World Health Organization. (‎2018b)‎. The Global Dementia Observatory Reference Guide. World Health Organization. https://apps.who.int/iris/handle/10665/272669.

World Health Organization. (2020). Process of translation and adaptation of instruments. (Management of substance abuse). https://www.who.int/substance_abuse/research_tools/translation/en/#

Yun, Y. S., Jaapar, S. Z. S., Fadzil, N. A., & Cheng, K. Y. (2018). Validation of the malay version of the affiliate stigma scale among caregivers of patients with mental illness. The Malaysian Journal of Medical Sciences: MJMS, 25(6), 127. https://doi.org/10.21315/mjms2018.25.6.13

Published

30-04-2023

How to Cite

Ellin, M. R. ., Ramoo, V. ., Yahaya, N. A., & Pin, T. M. . (2023). Association between Affiliate Stigma and Psychological Well-being among Caregivers of Patients with Dementia: A Quantitative Report . The Malaysian Journal of Nursing (MJN), 14(4), 132-141. https://doi.org/10.31674/mjn.2023.v14i04.014

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