Disclosure of Spousal Death to Patients with Dementia: Attitude and Actual Behavior of Care Managers

Abstract

As the number of dementia patients increases, there is a need to protect patients’ right to know. However, in reality, there are cases in Japan where spouses’ deaths are concealed from patients. We conducted a questionnaire survey of care managers (CMs) to obtain their attitude and actual behavior regarding the disclosure of a spouse’s death to patients with dementia. A self-administered, anonymous questionnaire survey was implemented at academic meetings attended by CMs from March to December 2019, inquiring about experiences with spousal deaths of patients with dementia, disclosure rates, behavioral and psychological symptoms of dementia, and depression. Over 80% had experienced the spousal death of a patient with dementia; the percentage of CMs who had implemented the disclosures varied widely. About 18% had experienced worsening behavioral and psychological symptoms of dementia (BPSD), and 26% had worsening depression as a result of the disclosure. About 83% of respondents were positive about disclosure, but about 44% did so less than 50% of the time. This study is the first to reveal the current state of CMs’ policies and behaviors regarding the disclosure of spousal death to patients with dementia in Japan. Family members’ wishes and the possibility of BPSD put a relatively large number of caregivers in a dilemma regarding disclosure.