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

Zou, Yang; Song, Ning; Hu, Yongbo; Gao, Ying; Zhang, Yueqi; Zhao, Qianhua; Guo, Qihao; Li, Xia; Li, Guanjun; Xiao, Shifu; Chen, Shengdi; Ren, Rong; Wang, Gang

doi:10.1017/s1041610217001132

Cited by 18 publications

(29 citation statements)

References 30 publications

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“…The relationship between education level and dementia knowledge level found in this study is consistent with that reported in previous studies [18,19,24,62]. People living in urban areas had a higher knowledge level of dementia than those living in rural areas.…”

Section: Discussionsupporting

confidence: 92%

“…In China, several studies exploring the dementia-related knowledge of different groups, such as community residents [22,23], family and hospital caregivers [12,24], and nursing assistants [25] have been conducted. Different groups of people have different levels of dementia knowledge, which are associated with region, education, experience of dementia.…”

Section: Introductionmentioning

confidence: 99%

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Public Knowledge about Dementia in China: A National WeChat-Based Survey

Liu

Cheng

et al. 2019

IJERPH

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Dementia is a serious public health problem. The more extensive dementia knowledge is, the more conducive it is to early prevention and treatment of dementia. However, no assessment of the general population’s dementia awareness has been conducted so far in China. Thus, this study assessed the national public knowledge of dementia based on mobile internet in China. We assessed 10,562 national respondents recruited based on the most popular social networking service in China, WeChat and analyzed the data using quantitative methods. The overall correct rate of total dementia knowledge was 63.14%. Only half of the participants (50.84%) could identify risk factors accurately. The level of dementia knowledge was positively associated with high education, city residency, and experience of exposure to information on dementia. The sandwich generation (aged 20–60 years) had the highest level of dementia knowledge. Chinese people were found to have a low level of knowledge about dementia, especially those aged over 60 years, with low education and living in rural areas. Further educational programs and campaigns are needed to improve dementia knowledge, with greater focus on the older population as the target audience, emphasis on dementia risk factors as educational content, correcting misconceptions about dementia, and providing more experience of exposure to dementia.

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Section: Discussionsupporting

confidence: 92%

Section: Introductionmentioning

confidence: 99%

Public Knowledge about Dementia in China: A National WeChat-Based Survey

Liu

Cheng

et al. 2019

IJERPH

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“…The potential of genotype testing, coupled the increasing prevalence of AD, present a likely scenario that APOE disclosure will become increasingly sought after by healthy individuals. Indeed, results from recent studies in both Western and Asian populations indicated that a majority of older adults preferred to be informed about a diagnosis of AD or dementia (van den Dungen et al, 2014;Zou et al, 2017). There is thus a pressing need for a better understanding of how APOE disclosure affects healthy individuals.…”

Section: Discussionmentioning

confidence: 99%

Impacts of apolipoprotein E disclosure on healthy Asian older adults: a cohort study

Sng

Yeo

Lin

et al. 2019

Int. Psychogeriatr.

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Background:The apolipoprotein E (APOE) genotype provides information about Alzheimer’s disease risk, yet genotype disclosure is discouraged due to concerns about possible distress. This is the first study investigating the psychological and behavioral impacts that genetic susceptibility testing for Alzheimer’s disease has in an Asian population.Methods:From March 2016 to November 2017, we ran a prospective cohort study at Duke-National University of Singapore Medical School. 280 healthy Chinese elderly filled in questionnaires that measured psychological symptoms and health behaviors, 1 week before and 6 weeks after APOE genotype disclosure. Responses from ε4-positive subjects (associated with greater Alzheimer’s disease risk) were compared to responses from ε4-negative subjects.Results:ε4 presence was not significantly associated with anxiety (p = 0.09) or depression (p = 0.25). No associations were found for changes to diet (p = 0.36), dietary supplements consumption (p = 0.90), physical activity (p = 0.15), or cognitive activity (p = 0.18).Conclusion:There is no evidence to suggest that disclosure of APOE to Asian populations was associated with any short-term adverse psychological or behavioral impacts.

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“…Studies have shown that there are significant differences between the end-of-life practices in China and some Western countries, especially regarding illness disclosure. 11,12 Cultural and national differences in informing patients regarding the nature and severity of their illness have been widely reported. Family pressures and concerns about discouraging the patient were cited as the reasons for nondisclosure.…”

Section: Discussionmentioning

confidence: 99%

“…In China, individuals make important personal decisions, such as regarding, for example, marriage or careers, in consultation with family members. 10,11…”

Section: Introductionmentioning

confidence: 99%

Death attitudes and truth disclosure: A survey of family caregivers of elders with terminal cancer in China

Tang

2018

Nurs Ethics

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Background: Although family caregivers play an important role in end-of-life care decisions, few studies have examined the communication between family caregivers and patients at the end of life. Objective: The objective was to describe family caregivers’ attitudes toward death, hospice, and truth disclosure. Research design: A quantitative method was used, and a closed-ended survey of 140 family caregivers was conducted in China. The subjects included 140 primary family caregivers of elders with terminal cancer enrolled at a hospice center from April to August 2017. Participants: 140 primary family caregivers of elders with terminal cancer participated the study. Research Context: A high proportion of cancer patients continue to receive inadequate information about their illness. Family caregivers’ inhibitions about disclosing information to cancer patients have not yet been the objects of research in China. Ethical considerations: This study was reported to and approved by the Regional Ethics Committee in Shenzhen, China. Findings: A questionnaire survey collected information on family caregivers’ background information, emotional state, personal needs, death attitudes, and truth-disclosure opinions. The results revealed that family caregivers’ death attitudes and truth-disclosure opinions played an important role in the process of caring for elders with terminal cancer. Discussion: By adopting a quantitative method, the author revealed not only the general patterns of family caregivers’ attitudes toward cancer diagnosis disclosure but also the reasons for their actions and the practices of family disclosure. Conclusion: The findings suggested that ineffective communication concerning end-of-life issues resulted from family caregivers’ lack of discussion and difficulty in hearing the news. Future studies should examine strategies for optimal communication between family caregivers and patients, especially with regard to breaking the bad news. Professional training in breaking bad news is important and is associated with self-reported truth-disclosure practices among family caregivers.

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

Abstract: 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.

Cited by 18 publications

References 30 publications

Public Knowledge about Dementia in China: A National WeChat-Based Survey

Public Knowledge about Dementia in China: A National WeChat-Based Survey

Impacts of apolipoprotein E disclosure on healthy Asian older adults: a cohort study

Death attitudes and truth disclosure: A survey of family caregivers of elders with terminal cancer in China

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