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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: doctorren2001@126.com, wgneuron@hotmail.com.
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: doctorren2001@126.com, wgneuron@hotmail.com.
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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.

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