Experiences of persons with early-onset dementia diagnosed as frontotemporal lobar degeneration and their families

• Project/Area Number: 18K17658
• Research Category: Grant-in-Aid for Early-Career Scientists
• Allocation Type: Multi-year Fund
• Review Section: Basic Section 58080:Gerontological nursing and community health nursing-related
• Research Institution: Japanese Red Cross College of Nursing
• Principal Investigator: Chiba Kyoko 日本赤十字看護大学, 看護学部, 准教授 (40248969)
• Project Period (FY): 2018-04-01 – 2023-03-31
• Project Status: Completed (Fiscal Year 2022)
• Budget Amount: ¥3,510,000 (Direct Cost: ¥2,700,000、Indirect Cost: ¥810,000); Fiscal Year 2021: ¥910,000 (Direct Cost: ¥700,000、Indirect Cost: ¥210,000); Fiscal Year 2020: ¥1,170,000 (Direct Cost: ¥900,000、Indirect Cost: ¥270,000); Fiscal Year 2019: ¥650,000 (Direct Cost: ¥500,000、Indirect Cost: ¥150,000); Fiscal Year 2018: ¥780,000 (Direct Cost: ¥600,000、Indirect Cost: ¥180,000)
• Keywords: 若年性認知症 / 前頭側頭葉変性症 / 家族 / 経験 / 前頭側頭型認知症

Outline of Final Research Achievements

The purpose of this study was to clarify the experiences of persons with early-onset dementia diagnosed as frontotemporal lobar degeneration (FTLD) and their families. Interviews were conducted with three families consisted of a person with early-onset dementia, his/her spouse, and their child(ren). By the interview, it was made clear as family’s experience that each family member had experienced their own illness before and after the life event that one of the family members was given a diagnosis of FTLD, and such experience had become a turning point for the family. By being given the diagnosis, it became evident that various pre-diagnosis experiences had been due to the illness. The husband of an ill wife had been able to “sustain” the marital relationship by incorporating the fact of his wife’s illness into their life story.

Academic Significance and Societal Importance of the Research Achievements

本研究は研究期間を4年間とし、継続的にデータ収集を行うことにより前頭側頭葉変性症と診断された若年性認知症者とその家族の経験を前向きに捉えることが出来る。若年性認知症者のケアを体系化する一助として、本人とその家族を対象とする総合的な支援を検討できる意義がある。