Turkish Adult Children as Caregivers of Parents with Alzheimer’s Disease: Perceptions and Caregiving Experiences

Dementia

Volumn 18, Issue 3, 2019, Pages 882-902

  Ar, Yagmur ^a   Karanci, A Nuray ^a  

^a MIDDLE EAST TECHNICAL UNIVERSITY   (Turkey)

Author keywords

Alzheimer s disease; caregiving; changes; collectivism; coping strategies; culture; familism

Indexed keywords

ADULT; ADULT CHILD; ALZHEIMER DISEASE; CAREGIVER; CHILD PARENT RELATION; COPING BEHAVIOR; CULTURAL ANTHROPOLOGY; FEMALE; HUMAN; INTERVIEW; MALE; PERCEPTION; PSYCHOLOGY; SOCIAL SUPPORT; TURKEY (BIRD);

ADAPTATION, PSYCHOLOGICAL; ADULT; ADULT CHILDREN; ALZHEIMER DISEASE; CAREGIVERS; CULTURE; FEMALE; HUMANS; INTERVIEWS AS TOPIC; MALE; PARENTS; PERCEPTION; SOCIAL SUPPORT; TURKEY;

EID: 85050656824     PISSN: 14713012     EISSN: 17412684     Source Type: Journal    
DOI: 10.1177/1471301217693400     Document Type: Article

References (66)

1. Ablitt, A, Jones, G., & Muers, J. (2010). Awareness of carer distress in people with dementia. International Journal of Geriatric Psychiatry, 25(12), 1246–1252.
2. Alzheimer’s Association. (2015). What is Alzheimer’s? Retrieved from http://www.alz.org/alzheimers_disease_what_is_alzheimers.asp.
3. Alvesson M., Skölberg K., (2009) Reflexive methodology: New vistas for qualitative research, London, England: SAGE.
4. Aranda M. P., Knight B. G., (1997) The influence of ethnicity and culture on the caregiver stress and coping process: A socio-cultural review and analysis. The Gerontologist 37(3): 342–354.
5. Bergman M., Graff C., Eriksdotte M., Fugl-Meyer K. S., Schuster M., (2016) The meaning of living close to a person with Alzheimer disease. Medicine, Health Care and Philosophy 19(3): 341–349.
6. Chi-Chan S. W., (2011) Family caregiving in dementia: The Asian perspective of a global problem. Dementia and Geriatric Cognitive Disorders 30(6): 469–478.
7. Chou K. R., LaMontagne L. L., Hepworth J. T., (1999) Burden experienced by caregivers of relatives with dementia in Taiwan. Nursing Research 48(4): 206–214.
8. Conde-Sala J. L., Garre-Olmo J., Turró-Garriga O., Vilalta-Franch J., López-Pousa S., (2010) Differential features of burden between spouse and adult-child caregivers of patients with Alzheimer’s disease: An exploratory comparative design. International Journal of Nursing Studies 47: 1262–1273.
9. Connel C. M., Gibson G. D., (1997) Racial, ethnic, and cultural differences in dementia caregiving: Review and analysis. The Gerontologist 37: 355–364.
10. Dai B., Mao Z., Wu B., Mei J., Levkoff S., Wang H., (2015) Family caregiver’s perception of Alzheimer’s disease and caregiving in Chinese culture. Social Work in Public Health 30(2): 185–196.
11. Dilworth-Anderson P., Gibson B. E., (2002) The cultural influences of values, norms, meanings, and perceptions in understanding dementia in ethnic minorities. Alzheimer Disease and Associated Disorders 16(2): 56–63.
12. Doka K. J., (2010) Grief, multiple loss and dementia. Bereavement Care 29(3): 15–20.
13. Elliott R., Fischer C. T., Rennie D. L., (1999) Evolving guidelines for the publication of qualitative research studies in psychology and related fields. British Journal of Clinical Psychology 38: 215–229.
14. Eraslan D., Yakali-Çamoğlu D., Harunzade Y. P., Ergun B. M., Dokur M., (2012) Interpersonal communication in and through family: Structure and therapy in Turkey. International Review of Psychiatry 24(2): 133–138.
15. Frank J. B., (2007) Evidence for grief as the major barrier faced by Alzheimer caregivers: A qualitative analysis. American Journal of Alzheimer’s Disease & Other Dementia 22(6): 516–527.
16. Fung K. K., (1998) Origin and development of Chinese cultures. Understanding Chinese cultures. In: A handbook for health care and rehabilitation professionals, Toronto, Canada: Yee Hong Centre for Geriatric Care. Retrieved form http://www.yeehong.com/centre/pdf/UnderstandingChineseCulturesHandbook.pdf, pp. 16–42.
17. Gallagher-Thompson D., Arean P., Coon D., Menéndez A., Takagi K., Haley W., Szapocznik J., (2000) Development and implementation of intervention strategies for culturally diverse caregiving populations. In: Schulz R., (ed.) Handbook on dementia caregiving: Evidence-based interventions for family caregivers, New York, NY: Springer, pp. 151–86.
18. Ginzler, E. (2009). Family caregiving, Alzheimer’s and caring for loved ones. Retrieved from http://www.aarp.org/family/caregiving/articles/ginzler.
19. Gupta R., Pillai V. K., (2002) Elder care giving in South Asian families: Implications for social service. Journal of Comparative Family Studies 33: 565–576.
20. Hamon R. R., (1992) Filial role enactment by adult children. Family Relations 41: 91–96.
21. Harper S., Lund D. A., (1990) Wives, husbands, and daughters caring for institutionalized and non-institutionalized dementia patients: Toward a model of caregiver burden. The International Journal of Aging and Human Development 30(4): 241–262.
22. Harris S. M., Adams M. S., Zubatsky M., White M., (2011) A caregiver perspective of how Alzheimer’s disease and related disorder affect couple intimacy. Aging & Mental Health 15(8): 950–960.
23. Harris G. M., Durkin D. W., Allen R. S., DeCoster J., & Burgio L. D. (2011). Exemplary care as a mediator of the effects of caregiver subjective appraisal and emotional outcomes. The Gerontologist, 51(3), 332–342.
24. Heo, G. J. (2014). Religious coping, positive aspects of caregiving, and social support among Alzheimer's Disease caregivers. Clinical Gerontologist, 37(4), 368–385
25. Hicks M. H., Lam M. S., (1999) Decision-making within the social course of dementia: Accounts by Chinese-American caregivers. Culture, Medicine and Psychiatry 23(4): 415–452.
26. Ho B., Friedland J., Rappolt S., Noh S., (2003) Caregiving for relatives with Alzheimer’s disease: Feelings of Chinese-Canadian woman. Gerontologist 17(3): 301–321.
27. Ho C. J., Weitzman P. F., Cui X., Levkoff S. E., (2008) Stress and service use among minority elders to elders with dementia. Journal of Geontological Social Work 33(1): 67–88.
28. Holland J. M., Thompson L. W., Tzuang M., Gallagher-Thompson D., (2010) Psychosocial factors among Chinese-American dementia caregivers and their association with salivary cortisol: Results of an exploratory study. Aging International 35: 109–127.
29. Ivey, S. L., Laditka, S. B., Price, A. E., Tseng, W., Beard, R. E., … Logsdon, R. D. (2012). Experiences and concerns of family caregivers providing support to people with dementia. A cross-cultural perspective. Dementia, 12(6), 806–820.
30. Janevic M. R., Connell C. M., (2001) Racial, ethnic, and cultural differences in the dementia caregiving experience: Recent findings. Gerontologist 40(3): 334–347.
31. Jarret W. H., (1995) Caregiving within kinship system: Is affection really necessary? The Gerontologist 25: 5–10.
32. Jarman, M., Smith, J. A., & Walsh, S. (1997). The psychological battle for control: A qualitative study of health-care professionals' understandings of the treatment of anorexia nervosa. Journal of Community & Applied Social Psychology, 7, 137–152.
33. Jones P. S., (1995) Paying respect: Care of elderly parents by Chinese and Filipino American women. Health Care for Women International 16(5): 385–398.
34. Kağıtçıbaşı Ç., (1994) A critical appraisal of individualism collectivism: Toward a new formulation. In: Kim U., Triandis H. C., Kağıtçıbaşı C., Yoon G., (eds) Individualism and collectivism: Theory, method and application, USA: SAGE Publications, pp. 52–66.
35. Kağıtçıbaşı, Ç. (1999). Yeni İnsan ve İnsanlar. İstanbul. Evrim Yayınevi.
36. Kara, M. A. (2006). Applicability of the principle of respect for autonomy: the perspective of Turkey, Journal of Medical Ethics, 66, 627–630.
37. Lai D. W. L., (2010) Filial piety, caregiving appraisal and caregiver burden. Research on Aging 32(2): 200–223.
38. Larkin M., Watts S., Clifton E., (2006) Giving voice and making sense in interpretative phenomenological analysis. Qualitative Research in Psychology 3: 102–120.
39. Lazarus R. S., Folkman S., (1984) Stress, appraisal, and coping, New York, NY: Springer.
40. Lee Y., Sung K., (1997) Cultural differences in caregiving motivations for demented parents: Korean caregivers versus American caregivers. International Journal of Aging and Human Development 44(2): 115–127.
41. Lim J., Griva K., Goh J., Chionh H. L., Yap P., (2010) Coping strategies influence caregiver outcomes among Asian family caregivers of persons with dementia in Singapore. Alzheimer Disease & Associated Disorders 25(1): 34–41.
42. Mahoney D. F., Cloutterbuck J., Neary S., Zhan L., (2005) African American, Chinese, and Latino family caregivers’ impressions of the onset and diagnosis of dementia: Cross-cultural similarities and differences. Gerontologist 45(6): 783–792.
43. McCurry S. M., Logsdon R. G., Teri L., Vitiello M. V., (2007) Sleep disturbances in caregivers of persons with dementia: Contributing factors and treatment implications. Sleep Medicine Reviews 11(2): 143–153.
44. Meuser, T. M. & Marwit, S. J. (2001). A comprehensive, stage-sensitive model of grief in dementia caregiving. The Gerontologist, 41(5), 658–670.
45. Min P. G., (1995) Chinese Americans. Asian Americans. In: Min P. G., (ed.) Contemporary Trends and Issues, London, England: Sage Publications, pp. 65–94.
46. Napoles, A. M., Chadiha L., Eversley, R., & Moreno-John, G. (2010). Developing culturally sensitive dementia caregiver interventions: Are we there yet? American Journal of Alzheimer's Disease and Other Dementia, 25(5), 389–406.
47. Ory M. G., Hoffman R. R., Yee J. L., Tennstedt S., Schulz R., (1999) Prevalence and impact of caregiving: A detailed comparison between dementia and non-dementia caregivers. The Gerontologist 39(2): 177–185.
48. Patterson T. L., Semple S. J., Shaw W. S., Yu E., He Y., Zhang M. Y., Grant I., (1998) The cultural context of caregiving: A comparison of Alzheimer’s caregivers in Shanghai, China and San Diego, California. Psychological Medicine 28(5): 1071–1084.
49. Rebuclic of Turkey Ministry of Family and Social Policy. (2016). Retrieved from http://en.aile.gov.tr/
50. Sandelowski M., (2001) Real qualitative researchers do not count: The use of numbers in qualitative research. Research in Nursing & Health 24(3): 230–240.
51. Sanders S., (2005) Is the glass half empty or full? Reflections on strain and gain in caregivers of individuals with Alzheimer’s disease. Social Work Health Care 40(3): 57–73.
52. Schulz R., O’Brien A. T., Bookwala J., Fleissner K., (1995) Psychiatric and physical morbidity effects of dementia caregiving: Prevalence, correlates, and causes. Gerontologist 35(6): 771–791.
53. Seyyar, A. (2010). Hastalar risalesi açısından hastalığın anlamı ve manevi faydaları. Retrieved August, 2016. Retrieved from http://www.manevibakim.com/bilim_alanlari/manevi_bakim/makale_13.asp.
54. Sethabouppha H., Kane C., (2005) Caring for the seriously mentally ill in Thailand: Buddhist family caregiving. Archives of Psychiatric Nursing 19: 44–57.
55. Smith J. A., Eatough V., (2007) Interpretative phenomenological analysis. In: Lyons E., Coyle A., (eds) Analysing qualitative data in psychology, London, England: Sage, pp. 35–50.
56. Smith J. A., Jarman M., Osborn M., (1999) Doing interpretative phenomenological analysis. In: Murray M., Chamberlein K., (eds) Qualitative health psychology, London: Sage, pp. 218–240.
57. Smith, J. A. & Osborn, M. (2003) Interpretative phenomenological analysis. In J. A. Smith (Ed.), Qualitative Psychology: A Practical Guide to Research Methods (pp. 53–80). London: Sage.
58. Sun F., Ong R., Burnette D., (2012) The influence of ethnicity and culture on dementia caregiving: A review of empirical studies on Chinese Americans. American Journal of Alzheimer’s Disease & Other Dementias 27(1): 13–22.
59. Touroni E., Coyle A., (2002) Decision-making in lesbian parenting: An interpretative phenomenological analysis. Journal of Community and Applied Social Psychology 12: 194–209.
60. Triandis H. C., Gelfand M. J., (1998) Converging measurement of horizontal and vertical individualism and collectivism. Journal of Personality and Social Psychology 74(1): 118–128.
61. Triandis H. C., Leung K., Villareal M. J., Clack F. L., (1985) Allocentric versus idiocentric tendencies: Convergent and discriminant validation. Journal of Research in Personality 19(4): 395–415.
62. Triandis H. C., Suh E. M., (2002) Cultural influences on personality. Annual Reviews of Psychology 53: 133–160.
63. Willig C., (2008) Introducing qualitative methods in psychology: Adventures in theory and method, 2nd ed. London, England: Open University Press.
64. Wittenberg E., Saada A., Prosser L. A., (2013) How illness affects family members: A qualitative interview survey. Patient 6(4): 257–268.
65. World Health Organization (2012) Dementia: A public health priority, Geneva, Switzerland: Author.
66. Youn G., Knight B. G., Jeong H., Benton D., (1999) Differences in familism values and caregiving outcomes among Korean, Korean American, and White American dementia caregivers. Pyschology and Aging 14(3): 355–364.