Perspectives on disclosure of the dementia diagnosis among primary care physicians in Japan: a qualitatively driven mixed methods study

BACKGROUND: The number of dementia patients in Japan is projected to reach seven million by 2025. While modern ethicists have largely reached the conclusion that full disclosure of dementia serves the best interest of patient, the implications of disclosure of a dementia diagnosis remains an underexplored area of research in Japan. The purpose of this study was to explore primary care physicians’ perspectives relative to the practice of disclosure of the dementia diagnosis. METHODS: In this qualitatively driven mixed methods project, we conducted semi-structured interviews with 24 primary care physicians using purposeful sampling to identify rural and urban representation. All interview recordings were transcribed verbatim and analyzed thematically. The research team iteratively conducted discussions of the concepts as they emerged until reaching thematic saturation. The summary was distributed to the participants for member checking and we incorporated their feedback into the final analysis. RESULTS: Of 24 participants, 12 practice in rural areas and 12 practice in urban/suburban areas. Participants’ attitudes varied in whether or not to disclose dementia diagnosis to the patients, and in the level of clarity of the name and the prognosis of the disease. Participants who were more comfortable in practicing disclosure were communicating collectively to the patients and their family members and those who were less comfortable practicing disclosure were concerned about patients’ feelings and had negative perceptions given the insidious progression of the disease. CONCLUSION: We found substantive individual differences in the approach to disclosure of the diagnosis of dementia and the level of comfort among primary care physicians. More dialogue about this issue and training to equip primary care physicians lacking confidence in their approach may be required. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12875-019-0964-1) contains supplementary material, which is available to authorized users.