Abstract

BackgroundBeing diagnosed with dementia is a confronting experience for any individual and their caregiver. However, a diagnosis provides opportunity for future preparation for management of the condition. This study investigated attitudes toward dementia and preferences for diagnosis among a sample of health service consumers in Japan.MethodsParticipants were patients or accompanying support persons (n = 217) who visited the specialty outpatient clinic of four hospital departments. The survey was conducted using an iPad with answers sent automatically to a secure server. The survey included items about the participants’ most feared diseases and the reasons behind those fears, estimates of dementia prevalence in Japan, and preferences regarding a diagnosis of dementia and the reasons for their preference.ResultsThe most feared disease was cancer (43.8 %), followed by dementia (18 %). Those selecting dementia most commonly reported practical, emotional and social impacts as the reasons why they most feared this condition. Almost all participants preferred to know the diagnosis of dementia as soon as possible for themselves, with significantly fewer preferring their spouse to know as soon as possible if they had dementia (95.9 % for self vs. 67.5 % for partner/spouse, p < 0.001). On average, participants estimated that 18.1 % of Japanese people are diagnosed with dementia by age 65, while they thought that 43.7 % of Japanese people are diagnosed with dementia by age 85.ConclusionsThe findings highlight a need for community education about the significant impacts of dementia on the lives of individuals and their caregivers. People were more reluctant for their spouse to receive a diagnosis as soon as possible if they had dementia. Physicians should sensitively disclose diagnosis and ensure they involve both the patient and their relatives in discussions about diagnosis disclosure.

Highlights

  • Being diagnosed with dementia is a confronting experience for any individual and their caregiver

  • The present study investigated among health service consumers in Japan: (1) fear of dementia relative to other health conditions and the reasons for this; (2) knowledge about the prevalence of dementia; and (3) preference for dementia diagnosis and the reasons for this

  • Half of participants (n = 110, 50.7 %) knew a person who was diagnosed with dementia but most of them were not providing care to that person (n = 94, 85.5 %)

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Summary

Introduction

Being diagnosed with dementia is a confronting experience for any individual and their caregiver. This study investigated attitudes toward dementia and preferences for diagnosis among a sample of health service consumers in Japan. The World Health Organization (WHO) reported that there are around 50 million people with dementia worldwide [1]. Japan has the highest elderly rate (28.1 %) in the world, with the number of people living with dementia estimated at 4.62 million people in 2012 [2,3,4]. In Japan, early diagnosis of dementia is sometimes called “early despair” by people who are suspected of dementia and their caregivers because the treatment effect is limited. Recent studies have emphasized the benefits of an early or timely diagnosis of dementia. Earlier diagnosis provides time to consider medical, psychological, financial, legal, and practical implications of having a dementia diagnosis [5, 6]

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