Do Patients Want to Listen to a Diagnosis of Dementia in Korea? Preferences on Disclosing a Diagnosis of Dementia and Discussing Advance Care Planning in Elderly Patients with Memory Concerns and Their Families

Abstract

ObjectiveIn this study, we aimed to investigate preferences regarding the disclosure of a dementia diagnosis and advance care planning (ACP) in patients with memory complaints and their families.MethodsA total of 98 patients who visited the department of psychiatry at a tertiary hospital with memory complaints and 62 family members completed a structured questionnaire. The questionnaire included preferences on disclosure of dementia and cancer diagnosis, awareness and preferences on ACP.ResultsIn total, 96.9% of patients were willing to know their dementia diagnosis. There were no significant differences in preferences between the diagnosis of cancer and dementia. Only 24.7% of patients and 45.8% of family members have heard of ACP. However, 82.8% of patients agreed on the necessity of ACP under the current condition. Multivariate analysis revealed that younger patients were more likely to agree with necessity for ACP under the current condition.ConclusionIn Korea, patients with memory complaints and their family members strongly favored a disclosure of dementia diagnosis. The majority of participants also agreed on the necessity of ACP. More active involvement of patients is needed in treatment decisions and care planning in cases of dementia as well as other life-threatening illnesses.

Attitude toward dementia and preferences for diagnosis in Japanese health service consumers

“…Almost all participants (95.9 %) wanted to know their diagnosis as soon as possible when they were suspected of having dementia, which is consistent with a previous studies [16][17][18][19]. On the other hand, fewer participants (67.5 %) preferred that their partner or spouse be told their diagnosis as soon as possible.…”

“…On the other hand, fewer participants (67.5 %) preferred that their partner or spouse be told their diagnosis as soon as possible. The proportion is also lower than that found in other studies in Australia (88 %), Korea (97 %) and Taiwan (76 %) [17][18][19] The preference not to tell the diagnosis to the partner or spouse may be explained by negative attitudes towards dementia among a significant proportion of the Japanese community. Caregivers' shame associated with dementia causes stigma to people with dementia such as concealing, shunning, and silencing [27], with approximately 40-50 % of Japanese people having a prejudice that dementia is a shameful disease [28].…”

“…Previous studies have examined the preferences for disclosure of dementia diagnosis among people living in the community. In the Japanese sample, 76-80 % of people preferred to be diagnosed with dementia when they first noticed symptoms [15], while studies conducted in other countries found larger proportions of people preferred to be diagnosed when symptoms were first noticed [11,[16][17][18][19]. Understanding Japanese health care consumers' knowledge and fears regarding dementia and preferences for diagnosis disclosure can provide important information about how physicians can support those who are diagnosed with dementia.…”

Priorities and Preferences of People Living with Dementia or Cognitive Impairment – A Systematic Review

“…Several studies found that more than 86% of PwD preferred to be informed about the dementia diagnosis. 37–39 Those PwD who receive a formal diagnosis show a higher QoL related to social life and the environment than PwD who have not received a formal diagnosis. 36 Another study highlighted that PwD would rather receive a false-positive diagnosis than staying undiagnosed.…”

“… 36 Future research should evaluate the best ways to deliver the diagnosis and minimize negative emotional and psychological impacts, such as fear, as well as whether an early diagnosis is associated with better patient-reported outcomes later on. 37 …”