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Caregivers’ attitude toward disclosure of Alzheimer's disease diagnosis in Urban China

Published online by Cambridge University Press:  29 June 2017

Yang Zou ,
Ning Song ,
Yong-bo Hu ,
Ying Gao ,
Yue-qi Zhang ,
Qian-hua Zhao ,
Qi-hao Guo ,
Xia Li ,
Guan-jun Li  and
Shi-fu Xiao
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Yang Zou
Affiliation:
Department of Neurology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China
Ning Song
Affiliation:
St Vincent's Hospital, Darlinghurst, Sydney, NSW, Australia
Yong-bo Hu
Affiliation:
Department of Neurology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China
Ying Gao
Affiliation:
Department of Neurology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China
Yue-qi Zhang
Affiliation:
Department of Neurology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China
Qian-hua Zhao
Affiliation:
Department of Neurology & Institute of Neurology, Huashan Hospital, Fudan University, Shanghai, China
Qi-hao Guo
Affiliation:
Department of Neurology & Institute of Neurology, Huashan Hospital, Fudan University, Shanghai, China
Xia Li
Affiliation:
Alzheimer's Disease and Related Disorders Center, Department of Geriatric Psychiatry, Shanghai Mental Health Center, Shanghai Jiao Tong University School of Medicine, Shanghai, China
Guan-jun Li
Affiliation:
Alzheimer's Disease and Related Disorders Center, Department of Geriatric Psychiatry, Shanghai Mental Health Center, Shanghai Jiao Tong University School of Medicine, Shanghai, China
Shi-fu Xiao
Affiliation:
Alzheimer's Disease and Related Disorders Center, Department of Geriatric Psychiatry, Shanghai Mental Health Center, Shanghai Jiao Tong University School of Medicine, Shanghai, China
Sheng-di Chen
Affiliation:
Department of Neurology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China
Ru-jing Ren*
Affiliation:
Department of Neurology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China
Gang Wang*
Affiliation:
Department of Neurology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China
*
Correspondence should be addressed to: Ru-jing Ren and Gang Wang, Ruijin 2nd Road 197, Shanghai 200025, China. Phone: 86-21-64454473; Fax: 86-21-64454473. Emails: [email protected], [email protected].
Correspondence should be addressed to: Ru-jing Ren and Gang Wang, Ruijin 2nd Road 197, Shanghai 200025, China. Phone: 86-21-64454473; Fax: 86-21-64454473. Emails: [email protected], [email protected].
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Abstract

Background:

Disclosing the diagnosis of Alzheimer's disease (AD) to a patient is controversial. There is significant stigma associated with a diagnosis of AD or dementia in China, but the attitude of the society toward disclosure of such a diagnosis had not been formally evaluated prior to our study. Therefore, we aimed to evaluate the attitude toward disclosing an AD diagnosis to patients in China with cognitive impairment from their caregivers, and the factors that may affect their attitude.

Methods:

We designed a 17-item questionnaire and administered this questionnaire to caregivers, who accompanied patients with cognitive impairment or dementia in three major hospitals in Shanghai, China. The caregiver's attitude toward disclosing the diagnosis of AD as evaluated by the questionnaire was compared to that of disclosing the diagnosis of terminal cancer.

Results:

A majority (95.7%) of the 175 interviewed participants (mean 14.2 years of education received) wished to know their own diagnosis if they were diagnosed with AD, and 97.6% preferred the doctor to tell their family members if they were diagnosed with AD. If a family member of the participants suffered from AD, 82.9% preferred to have the diagnosis disclosed to the patient. “Cognitive impairment” was the most accepted term by caregivers to disclose AD diagnosis in Chinese.

Conclusion:

This study suggests most of the well-educated individuals in a Chinese urban area favored disclosing the diagnosis when they or their family members were diagnosed with AD.

Keywords

Alzheimer's diseasedementia
Type
Research Article
Information
International Psychogeriatrics , Volume 29 , Issue 11 , November 2017 , pp. 1849 - 1855
Copyright
Copyright © International Psychogeriatric Association 2017 

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Footnotes

#

The two authors contribute equally.

References

Byszewski, A. M., Molnar, F. J., Aminzadeh, F., Eisner, M., Gardezi, F. and Bassett, R. (2007). Dementia diagnosis disclosure: a study of patient and caregiver perspectives. Alzheimer Disease & Associated Disorders, 21, 107–114.Google Scholar
Caruana-Pulpan, O. and Scerri, C. (2014). Practices in diagnosis, disclosure and pharmacotherapeutic management of dementia by general practitioners–a national survey. Aging & Mental Health, 18, 179–186.Google Scholar
Elson, P. (2006). Do older adults presenting with memory complaints wish to be told if later diagnosed with Alzheimer's disease? International Journal of Geriatric Psychiatry, 21, 419–425.Google Scholar
Erde, E. L., Nadal, E. C. and Scholl, T. O. (1988). On truth telling and the diagnosis of Alzheimer's disease. Journal of Family Practice, 26, 401–406.Google Scholar
Fahy, M., Wald, C., Walker, Z. and Livingston, G. (2003). Secrets and lies: the dilemma of disclosing the diagnosis to an adult with dementia. Age and Ageing, 32, 439–441.Google Scholar
Ferris, S. H., Hofeldt, G. T., Carbone, G., Masciandaro, P., Troetel, W. M. and Imbimbo, B. P. (1999). Suicide in two patients with a diagnosis of probable Alzheimer disease. Alzheimer Disease & Associated Disorders, 13, 88–90.Google Scholar
Gooblar, J., Roe, C. M., Selsor, N. J., Gabel, M. J. and Morris, J. C. (2015). Attitudes of research participants and the general public regarding disclosure of Alzheimer disease research results. JAMA Neurology, 72, 1484–1490.CrossRefGoogle ScholarPubMed
Holroyd, S., Snustad, D. G. and Chalifoux, Z. L. (1996). Attitudes of older adults' on being told the diagnosis of Alzheimer's disease. Journal of the American Geriatrics Society, 44, 400–403.Google Scholar
Jha, A., Tabet, N. and Orrell, M. (2001). To tell or not to tell-comparison of older patients' reaction to their diagnosis of dementia and depression. International Journal of Geriatric Psychiatry, 16, 879–885.Google Scholar
Jia, J. et al. (2014). The prevalence of dementia in urban and rural areas of China. Alzheimers & Dementia, 10, 1–9.Google Scholar
Jia, J. P., Wang, Y. H. and Cai, X. J. (2011). Chinese guidelines for diagnosis and management of cognitive impairment and dementia (VII): care and ethical consultation. Zhonghua Yi Xue Za Zhi, 91, 1081–1083.Google Scholar
Johnson, H., Bouman, W. P. and Pinner, G. (2000). On telling the truth in Alzheimer's disease: a pilot study of current practice and attitudes. International Psychogeriatrics, 12, 221–229.CrossRefGoogle ScholarPubMed
Laakkonen, M. L. et al. (2008). How do elderly spouse care givers of people with Alzheimer disease experience the disclosure of dementia diagnosis and subsequent care? Journal of Medical Ethics, 34, 427–430.Google Scholar
Lin, K. N., Liao, Y. C., Wang, P. N. and Liu, H. C. (2005). Family members favor disclosing the diagnosis of Alzheimer's disease. International Psychogeriatrics, 17, 679–688.Google Scholar
Maguire, C. P., Kirby, M., Coen, R., Coakley, D., Lawlor, B. A. and O'Neill, D. (1996). Family members' attitudes toward telling the patient with Alzheimer's disease their diagnosis. BMJ, 313, 529–530.Google Scholar
Marzanski, M. (2000). Would you like to know what is wrong with you? On telling the truth to patients with dementia. Journal of Medical Ethics, 26, 108–113.Google Scholar
Mormont, E., de Fays, K. and Jamart, J. (2012). Experiences of the patients and their caregivers regarding the disclosure of the diagnosis of Alzheimer's disease: a Belgian retrospective survey. Acta Neurologica Belgica, 112, 249–254.Google Scholar
Mormont, E., Jamart, J. and Jacques, D. (2014). Symptoms of depression and anxiety after the disclosure of the diagnosis of Alzheimer disease. Journal of Geriatric Psychiatry and Neurology, 27, 231–236.Google Scholar
Novack, D. H., Plumer, R., Smith, R. L., Ochitill, H., Morrow, G. R. and Bennett, J. M. (1979). Changes in physicians' attitudes toward telling the cancer patient. JAMA, 241, 897–900.Google Scholar
Ouimet, M. A., Dendukuri, N., Dion, D., Beizile, E. and Elie, M. (2004). Disclosure of Alzheimer's disease. Senior citizens' opinions. Canadian Family Physician, 50, 1671–1677.Google Scholar
Pinner, G. and Bouman, W. P. (2003). Attitudes of patients with mild dementia and their carers towards disclosure of the diagnosis. International Psychogeriatrics, 15, 279–288.Google Scholar
Pucci, E., Belardinelli, N., Borsetti, G. and Giuliani, G. (2003). Relatives' attitudes towards informing patients about the diagnosis of Alzheimer's disease. Journal of Medical Ethics, 29, 51–54.Google Scholar
Raicher, I., Shimizu, M. M., Takahashi, D. Y., Nitrini, R. and Caramelli, P. (2008). Alzheimer's disease diagnosis disclosure in Brazil: a survey of specialized physicians' current practice and attitudes. International Psychogeriatrics, 20, 471–481.Google Scholar
Riva, M. et al. (2014). Diagnosis disclosure and advance care planning in Alzheimer disease: opinions of a sample of Italian citizens. Aging Clinical and Experimental Research, 26, 427–434.Google Scholar
Robinson, S. M., Canavan, M. and O'Keeffe, S. T. (2014). Preferences of older people for early diagnosis and disclosure of Alzheimer's disease (AD) before and after considering potential risks and benefits. Archivces of Gerontology and Geriatric, 59, 607–612.Google Scholar
Shimizu, M. M., Raicher, I., Takahashi, D. Y., Caramelli, P. and Nitrini, R. (2008). Disclosure of the diagnosis of Alzheimer's disease: caregivers' opinions in a Brazilian sample. Arquivos de Neuro-Psiquiatria, 66, 625–630.Google Scholar
Sullivan, K. and O'Conor, F. (2001). Should a diagnosis of Alzheimer's disease be disclosed? Aging & Mental Health, 5, 340–348.Google Scholar
Tarek, M. E., Segers, K. and Van Nechel, C. (2009). What belgian neurologists and neuropsychiatrists tell their patients with Alzheimer disease and why: a national survey. Alzheimer Disease & Associated Disorders, 23, 33–37.Google Scholar
Turnbull, Q., Wolf, A. M. and Holroyd, S. (2003). Attitudes of elderly subjects toward “truth telling” for the diagnosis of Alzheimer's disease. Journal of Geriatric Psychiatry and Neurology, 16, 90–93.Google Scholar
Umegaki, H., Onishi, J., Suzuki, Y., Endo, H. and Iguchi, A. (2007). Attitudes toward disclosing the diagnosis of dementia in Japan. International Psychogeriatrics, 19, 253–265.Google Scholar
van den Dungen, P. et al. (2014). Preferences regarding disclosure of a diagnosis of dementia: a systematic review. International Psychogeriatrics, 26, 1603–1618.Google Scholar
Vince, A., Clarke, C. and Wolverson, E. L. (2017). The meaning and experience of well-being in dementia for psychiatrists involved in diagnosticdisclosure: a qualitative study. International Psychogeriatrics, 29, 93–104.Google Scholar