Factors Influencing Whether Patients and Caregivers Wish to Have a Dementia Diagnosis Disclosed

Although several studies have been conducted on dementia disclosure, research on the factors influencing the desire for disclosure remains limited. This study aimed to identify the factors that determine whether patients and caregivers wish to disclose a dementia diagnosis.

We conducted a retrospective survey of 804 patients who visited the Dementia Disease Medical Center at the Kyoto Prefectural University of Medicine Hospital. A total of 201 patients were included in this study. We compared survey responses between two groups: those in which the patient wanted the dementia diagnosis disclosed versus those who did not, and those in which the caregiver wanted the diagnosis disclosed versus those who did not. Statistical analyses included the chi-squared test, Fisher's exact test and Mann-Whitney U test.

A total of 188 patients (93.5%) wanted to be disclosed about dementia diagnosis, while 151 caregivers (75.1%) wished for the patient's diagnosis to be disclosed. There was a significant difference in hallucinations (as measured by the Neuropsychiatric Inventory 12-item version) between patients who wanted the diagnosis disclosed and those who did not (p < 0.001). Additionally, caregivers who wanted the patient to be informed reported milder symptoms of agitation (p = 0.014) and apathy (p = 0.005) in the patients than did those who did not want the information disclosed. Furthermore, when patients requested a medical examination, caregivers requested that the diagnosis be disclosed to them (p = 0.037).

The findings indicate a gap in the awareness of dementia information disclosure between patients and caregivers in Japan. Furthermore, the factors influencing the desire for disclosure appear to differ between patients and caregivers.