Development of a Decision Support Model for People with Young-Onset Dementia and Their Families

2023 Fiscal Year Final Research Report

• Project/Area Number: 20K10974
• Research Category: Grant-in-Aid for Scientific Research (C)
• Allocation Type: Multi-year Fund
• Section: 一般
• Review Section: Basic Section 58080:Gerontological nursing and community health nursing-related
• Research Institution: Teikyo University of Science & Technology
• Principal Investigator: Kaori Umezaki 帝京科学大学, 医療科学部, 講師 (60737005)
• Co-Investigator(Kenkyū-buntansha): 糸井 和佳 帝京科学大学, 医療科学部, 教授 (30453658) ; 山川 みやえ 大阪大学, 大学院医学系研究科, 准教授 (80403012) ; 柴 珠実 愛媛大学, 医学系研究科, 講師 (60382397)
• Project Period (FY): 2020-04-01 – 2024-03-31
• Keywords: 若年性アルツハイマー型認知症 / 当事者研究 / 質的研究 / 患者本人の思い

Outline of Final Research Achievements

An interview survey was conducted with individuals diagnosed with early-onset Alzheimer's disease (YOAD) confirmed by amyloid PET scans and their spouses to understand their thoughts from the time of diagnosis to the present. The results revealed that YOAD individuals, despite the shock of the diagnosis and their difficulty in accepting the name of the disease, expressed a desire for active social participation, hoped for an increase in services that offer support and empathy, and wished for their current life to continue for as long as possible. The spouses desired an environment where information and services were easily accessible and felt complex emotions due to the various changes accompanying the disease's progression. Both the individuals and their spouses showed a need to accept living with dementia at a relatively young age and, despite the initial shock, demonstrated a determination to face the future together as a couple.

Free Research Field

老年看護学

Academic Significance and Societal Importance of the Research Achievements

若年性アルツハイマー型認知症は確定診断が可能となったが高齢者向けの介護保険中心の対応では、若年の患者の生活スタイルには合わず、支援が不十分であるため早期発見・早期絶望となっている。本研究で若年性アルツハイマー型認知症者本人と近い将来主介護者となるであろう配偶者の思いが明らかになった。この結果は本人・家族に対する支援モデルを検討するうえでの一助となると考える。また認知症は進行性の疾患であるためこの先も本人・配偶者の思いを明らかにし続けることで、診断を受けてから認知症末期までの継続型支援モデルの検討も可能となると考える。