Journal of Health And Care
Volume 26, Issue 3 (Autumn 2024)
JHC 2024, 26(3): 294-307 |
Back to browse issues page
Clinical trials code: IR.IUMS.REC.1402.428
Download citation:
BibTeX | RIS | EndNote | Medlars | ProCite | Reference Manager | RefWorks
Send citation to:
BibTeX | RIS | EndNote | Medlars | ProCite | Reference Manager | RefWorks
Send citation to:
Khezri K, Hosseini R S, Atarzadeh M, Haghani S. Investigating the Affiliated Stigma and Its Associated Factors among Informal Caregivers of the Older Adults with
Alzheimer's Disease. JHC 2024; 26 (3) :294-307
URL: http://hcjournal.arums.ac.ir/article-1-1573-en.html
URL: http://hcjournal.arums.ac.ir/article-1-1573-en.html
Department of Gerontology, School of Behavioral Sciences and Mental Health (Tehran Institute of Psychiatry), Iran University of Medical Sciences, Tehran, Iran
Abstract: (66 Views)
Background: Alzheimer's disease, which affects memory and cognition, makes patients increasingly dependent on their caregivers. Informal caregivers feel socially rejected due to the presence of the patient in their family and this causes affiliated stigma towards them. This study aimed to investigate the affiliate stigma and its associated factors among family caregivers of older adults with Alzheimer's disease.
Methods: This cross-sectional study was conducted on 203 family caregivers of older adults with Alzheimer's disease in dementia and Alzheimer's association in Tehran, Iran. Data collection tools included the Demographic Information Sheet and Affiliate Stigma Scale (ASS). Data were analyzed using SPSS version 16 using descriptive statistics and Pearson correlation coefficient tests, independent t-tests, and analysis of variance.
Results: According to the results, the mean ages of the older adults with Alzheimer's disease and their caregivers was 76.62±7.87 and 55.59±13.66 years, respectively. The mean score of the affiliated stigma among the family caregivers of the older adults with Alzheimer's disease was 37.14±10.35. The affectional domain of stigma with a score of 2.09±0.59 and the behavioral domain of stigma with a score of 1.5±0.49 were the highest and the lowest rated dimensions, respectively. Additionally, affiliated stigma was significantly associated with caregivers’ demographic variables such as age, educational level, occupation, and relationship with the patient (p<0.05).
Conclusion: The results of this study showed that the affiliated stigma in family caregivers of patients with Alzheimer's disease is limited, but regardless of the level of stigma, it is considered a major problem and can affect many different aspects of caregivers and patients’ lives. Therefore, it is necessary to develop appropriate plans to provide effective services for family caregivers of the older adults with Alzheimer's disease and improve the quality of life of this vulnerable group.
Methods: This cross-sectional study was conducted on 203 family caregivers of older adults with Alzheimer's disease in dementia and Alzheimer's association in Tehran, Iran. Data collection tools included the Demographic Information Sheet and Affiliate Stigma Scale (ASS). Data were analyzed using SPSS version 16 using descriptive statistics and Pearson correlation coefficient tests, independent t-tests, and analysis of variance.
Results: According to the results, the mean ages of the older adults with Alzheimer's disease and their caregivers was 76.62±7.87 and 55.59±13.66 years, respectively. The mean score of the affiliated stigma among the family caregivers of the older adults with Alzheimer's disease was 37.14±10.35. The affectional domain of stigma with a score of 2.09±0.59 and the behavioral domain of stigma with a score of 1.5±0.49 were the highest and the lowest rated dimensions, respectively. Additionally, affiliated stigma was significantly associated with caregivers’ demographic variables such as age, educational level, occupation, and relationship with the patient (p<0.05).
Conclusion: The results of this study showed that the affiliated stigma in family caregivers of patients with Alzheimer's disease is limited, but regardless of the level of stigma, it is considered a major problem and can affect many different aspects of caregivers and patients’ lives. Therefore, it is necessary to develop appropriate plans to provide effective services for family caregivers of the older adults with Alzheimer's disease and improve the quality of life of this vulnerable group.
Type of Study: article |
Subject:
پرستاری
Received: 2024/07/9 | Accepted: 2024/12/8 | Published: 2024/09/23
Received: 2024/07/9 | Accepted: 2024/12/8 | Published: 2024/09/23
References
1. Jafari M, Alipour F, Raheb G, Mardani M. Perceived stress and burden of care in elderly caregivers: the moderating role of resilience. Iranian Journal of Ageing. 2022;17(1):62-75. [Persian] [DOI:10.32598/sija.2021.2575.2]
2. Khaje-Bishak Y, Payahoo L, Pourghasem B, Jafarabadi MA. Assessing the quality of life in elderly people and related factors in Tabriz, Iran. Journal of Caring Sciences. 2014;3(4):257.
3. World Health Organization (2022). Fact sheets, Ageing and health, Available: https://www.who.int/news-room/fact-sheets/detail/ageing-and-health. Accessed 5 January 2023.
4. Mahmoudi N, Abolfathi Momtaz Y, Foroughan M, Zanjari N, Mohaqeqi Kamal SH. Prevalence of social isolation among older adults in Tehran, Iran, and its associated factors. Archives of Rehabilitation. 2022;23(1):88-111. [Persian] [DOI:10.32598/RJ.23.1.3390.1]
5. Magnuson A, Sattar S, Nightingale G, Saracino R, Skonecki E, Trevino KM. A practical guide to geriatric syndromes in older adults with cancer: a focus on falls, cognition, polypharmacy, and depression. American Society of Clinical Oncology Educational Book. 2019;39:96-109. [DOI:10.1200/EDBK_237641] [PMID]
6. Fahanik‐Babaei J, Sedighi M, Mehrabi S, Pournik O, Sheikh Taheri A, Kamalzadeh L, et al. Preliminary report of Iranian registry of alzheimer's disease in Tehran province: a cross‐sectional study in Iran. Health Science Reports. 2022;5(6):952. [DOI:10.1002/hsr2.952] [PMID] []
7. World health organization (2023). Fact sheets, Dementia, Available: https://www.who.int/news-room/fact-sheets/detail/dementia. Accessed 5 January 2023.
8. Khastar SM, Hoseini SH, Arsalani N, Mohammadi F. Care burden, fatigue, and family functioning among family caregivers of older adults with alzheimer's disease: a cross-sectional study. Journal of Nursing Advances in Clinical Sciences. 2024;1(2):63-70. [DOI:10.32598/JNACS.2403.1012]
9. Jafari F, Chegini S, Jadidi H. Family caregiver's problems of alzheimer patients and their relationship with caregiver's mental health. Journal of Excellence in Counseling and Psychotherapy. 2016;5(19):93-105. [Persian]
10. Zohari S, Khatoni S. Abed Saeedi, ZH, Alavi Majd H. Yaghmaie F. Problems of main caregivers of alzheimer patients referring to alzheimer association in Tehran. Journal of Nursing and Midwifery Quarterly-Shaheed Beheshti University of Medical Sciences and Health Services. 2006;16(53):64-72. [Persian]
11. Vespa A, Spatuzzi R, Fabbietti P, Penna M, Giulietti MV. Association between care burden, depression and personality traits in alzheimer's caregiver: a pilot study. PLoS One. 2021;16(9):0251813. [DOI:10.1371/journal.pone.0251813] [PMID] []
12. Kahn PV, Wishart HA, Randolph JS, Santulli RB. Caregiver stigma and burden in memory disorders: an evaluation of the effects of caregiver type and gender. Current Gerontology and Geriatrics Research. 2016;2016(1):8316045. [DOI:10.1155/2016/8316045] [PMID] []
13. Mahomed A, Pretorius C. Understanding the lived experiences of family caregivers of individuals with dementia in Soweto, a south African township. Dementia. 2022;21(7):2264-87. [DOI:10.1177/14713012221118441] [PMID] []
14. Navab E, Alipour M, Parvizy S, Haghani H, Bahramnezhad F. Perceived stigma among the family caregivers of people with alzheimer's disease. Nursing Journal of the Vulnerable. 2019;6(1):1-12. [Persian]
15. Hoseinpoor M, Nourozi K, Rahgoi A, Ghasemi S, Noroozi M, Babaie M. The relationship between care burden, care preparedness and the quality of life in the home caregivers of the elderly with the alzheimer's disease in Iran alzheimer's association. Journal of Gerontology. 2021;6(2):10-18. [Persian]
16. Goffman E. Stigma: Notes on the Management of Spoiled Identity. Simon and Schuster; 2009.
17. Mohamadi M, Mohtashami J, Vasli P, Khajavi A, Tavakoli S. The correlation between help-seeking behaviour, social comparison and stigma in caregivers of children with autism. Medical Science. 2019;23(96):146-51.
18. Joyce O, Blessing U. Affiliate stigma and compassion satisfaction amongst mental health service providers at a regional psychiatric hospital in Nigeria. Journal of Behavior Therapy and Mental Health. 2019;2(1):30-39. [DOI:10.14302/issn.2474-9273.jbtm-19-2854]
19. Perugino F, De Angelis V, Pompili M, Martelletti P. Stigma and chronic pain. Pain and Therapy. 2022;11(4):1085-94. [DOI:10.1007/s40122-022-00418-5] [PMID] []
20. Ali A, Hassiotis A, Strydom A, King M. Self stigma in people with intellectual disabilities and courtesy stigma in family carers: a systematic review. Research in Developmental Disabilities. 2012;33(6):2122-40. [DOI:10.1016/j.ridd.2012.06.013] [PMID]
21. Lopez RP, Rose KM, Kenney L, Sanborn V, Davis JD. Managing shame: a grounded theory of how stigma manifests in families living with dementia. Journal of the American Psychiatric Nurses Association. 2020;26(2):181-88. [DOI:10.1177/1078390319832965] [PMID]
22. Kumar R, Mishra S, Singh A, Kumar P, Singh B. Family burden and perceived stigma among caregivers of patients with schizophrenia. International Journal of Indian Psychȯlogy. 2022;10(1):973-78.
23. Saffari M, Lin CY, Koenig HG, O'Garo KG, Broström A, Pakpour AH. A Persian version of the affiliate stigma scale in caregivers of people with dementia. Health Promotion Perspectives. 2019;9(1):31-39. [DOI:10.15171/hpp.2019.04] [PMID] []
24. Chang CC, Su JA, Lin CY. Using the Affiliate Stigma Scale with caregivers of people with dementia: psychometric evaluation. Alzheimer's Research & Therapy.2016;8:1-8. [DOI:10.1186/s13195-016-0213-y] [PMID] []
25. Chang CC, Su JA, Tsai CS, Yen CF, Liu JH, Lin CY. Rasch analysis suggested three unidimensional domains for Affiliate Stigma Scale: additional psychometric evaluation. Journal of Clinical Epidemiology. 2015;68(6):674-83. [DOI:10.1016/j.jclinepi.2015.01.018] [PMID]
26. Safiri Hassan Abadi S, Safiri Hasanabadi S, Shahsavari MR. Affiliate stigma in first and second degree relatives of people with disabilities. Social Cognition. 2021;10(19):197-210.
27. Su JA, Chang CC. Association between family caregiver burden and affiliate stigma in the families of people with dementia. International Journal of Environmental Research and Public Health. 2020;17(8):2772. [DOI:10.3390/ijerph17082772] [PMID] []
28. Mak WW, Cheung RY. Affiliate stigma among caregivers of people with intellectual disability or mental illness. Journal of Applied Research in Intellectual Disabilities. 2008;21(6):532-545. [DOI:10.1111/j.1468-3148.2008.00426.x]
29. Park S, Park KS. Family stigma: a concept analysis. Asian Nursing Research. 2014;8(3):165-71. [DOI:10.1016/j.anr.2014.02.006]
30. Rosin ER, Blasco D, Pilozzi AR, Yang LH, Huang X. A narrative review of alzheimer's disease stigma. Journal of Alzheimer's Disease. 2020;78(2):515-28. [DOI:10.3233/JAD-200932] [PMID] []
31. Boyd JE, Adler EP, Otilingam PG, Peters T. Internalized Stigma of Mental Illness (ISMI) scale: a multinational review. Comprehensive Psychiatry. 2014;55(1):221-31. [DOI:10.1016/j.comppsych.2013.06.005] [PMID]
32. Ellin MR, Ramoo V, Yahaya NA, Pin TM. Association between affiliate stigma and psychological well-being among caregivers of patients with dementia: a quantitative report. The Malaysian Journal of Nursing. 2023;14(4):132-41. [DOI:10.31674/mjn.2023.v14i04.014]
33. Grover S, Somani A. Etiologies and risk factors for dementia. Journal of Geriatric Mental Health. 2016;3(2):100-107. [DOI:10.4103/2348-9995.195601]
34. Ebrahim OS, Al-Attar GS, Gabra RH, Osman DM. Stigma and burden of mental illness and their correlates among family caregivers of mentally ill patients. Journal of the Egyptian Public Health Association. 2020;95(31):1-9. [DOI:10.1186/s42506-020-00059-6] [PMID] []
35. Chen YJ, Su JA, Chen JS, Liu CH, Griffiths MD, Tsai HC et al. Examining the association between neuropsychiatric symptoms among people with dementia and caregiver mental health: are caregiver burden and affiliate stigma mediators? BMC Geriatrics. 2023;23(1):27. [DOI:10.1186/s12877-023-03735-2] [PMID] []
36. Jeong JS, Kim SY, Kim JN. Ashamed caregivers: self-stigma, information, and coping among dementia patient families. Journal of Health Communication. 2020;25(11):870-78. [DOI:10.1080/10810730.2020.1846641] [PMID]
37. Chang CC, Yen CF, Jang FL, Su JA, Lin CY. Comparing affiliate stigma between family caregivers of people with different severe mental illness in Taiwan. The Journal of Nervous and Mental Disease. 2017;205(7):542-49. [DOI:10.1097/NMD.0000000000000671] [PMID]
38. Kiani H, Ali S, Rahman A, Khattak AZ, Fardoos S. Caregivers burden and treatment seeking behavior among neurotic and psychotic patients: a cross-sectional study. Al-Qanṭara. 2023;9(2):39-55.
39. Creese B, Vassos E, Bergh S, Athanasiu L, Johar I, Rongve A, et al. Examining the association between genetic liability for schizophrenia and psychotic symptoms in alzheimer's disease. Translational Psychiatry. 2019;9(1):273. [DOI:10.1038/s41398-019-0592-5] [PMID] []
40. Parveen S, Mehra A, Kumar K, Grover S. A comparative study of caregiver burden and stigma among the caregivers of patients with dementia and schizophrenia. Journal of Geriatric Mental Health. 2021;8(1):15-19. [DOI:10.4103/jgmh.jgmh_10_21]
41. Li Y, Qiu D, Wu Q, Ni A, Tang Z, Xiao S. Affiliate stigma and its association with family burden among family members of people living with schizophrenia in China. Schizophrenia Research. 2024;267:193-200. [DOI:10.1016/j.schres.2024.03.046] [PMID]
42. Van den Bossche P, Schoenmakers B. The impact of dementia's affiliate stigma on the mental health of relatives: a cross section survey. Frontiers in Psychology. 2022;12:789105. [DOI:10.3389/fpsyg.2021.789105] [PMID] []
43. Zhang Y, Subramaniam M, Lee SP, Abdin E, Sagayadevan V, Jeyagurunathan A, et al. Affiliate stigma and its association with quality of life among caregivers of relatives with mental illness in Singapore. Psychiatry Research. 2018;265:55-61. [DOI:10.1016/j.psychres.2018.04.044] [PMID]
44. Abojabel H, Werner P. Exploring family stigma among caregivers of persons with Alzheimer's disease: the experiences of Israeli-Arab caregivers. Dementia. 2019;18(1):391-408. [DOI:10.1177/1471301216673920] [PMID]
45. Zwar L, Angermeyer MC, Matschinger H, Riedel-Heller SG, König HH, Hajek A. Are informal family caregivers stigmatized differently based on their gender or employment status? a German study on public stigma towards informal long-term caregivers of older individuals. BMC Public Health. 2021;21:1-4. [DOI:10.1186/s12889-021-11955-7] [PMID] []
46. Farzand M, Baysen E. Group differences on affiliate stigma experienced by family caregivers of psychiatric patients. Quality & Quantity. 2018;52(5):2403-12. [DOI:10.1007/s11135-017-0675-4]
47. Riquelme-Hera H, Gomez-Gomez C, Aranda-Galarza I. Relationship of stigma to caregivers burden in alzheimer's disease patients. Journal Primary Health Care Gen Practice. 2018;2(2):1-7.
48. Wang YZ, Meng XD, Zhang TM, Weng X, Li M, Luo W, et al. Affiliate stigma and caregiving burden among family caregivers of persons with schizophrenia in rural China. International Journal of Social Psychiatry. 2023;69(4):1024-32. [DOI:10.1177/00207640231152206] [PMID]
49. Refaat Alam R, Hassan Mounir Radwan E, Mohamed Hassan Saleh N. Relationship between caregiving burden, knowledge and stigma of caregivers caring for older adults with alzheimer disease. Egyptian Journal of Health Care. 2021;12(2):332-44. [DOI:10.21608/ejhc.2021.153171]
Send email to the article author
| Rights and permissions | |
 |
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License. |