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

Research Project

Project/Area Number 20K10974
Research Category

Grant-in-Aid for Scientific Research (C)

Allocation TypeMulti-year Fund
Section一般
Review Section Basic Section 58080:Gerontological nursing and community health nursing-related
Research InstitutionTeikyo 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
Project Status Completed (Fiscal Year 2023)
Budget Amount *help
¥4,290,000 (Direct Cost: ¥3,300,000、Indirect Cost: ¥990,000)
Fiscal Year 2022: ¥1,690,000 (Direct Cost: ¥1,300,000、Indirect Cost: ¥390,000)
Fiscal Year 2021: ¥1,300,000 (Direct Cost: ¥1,000,000、Indirect Cost: ¥300,000)
Fiscal Year 2020: ¥1,300,000 (Direct Cost: ¥1,000,000、Indirect Cost: ¥300,000)
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 / 確定診断 / 当事者 / 若年性アルツハイマー型認知症者 / 診断後の思いや体験 / 意思決定 / 髄液検査 / 若年性認知症 / 意思決定支援
Outline of Research at the Start

若年性認知症は高齢認知症より進行も早く、進行に合わせて生活様式の変更や認知症のみならず延命に関する治療方法の選択など意思決定場面が多く求められる。症状の進行とともに意思表出が難しくなるため、本人・家族への意思決定支援は重要である。
そこで本研究の目的は①進行した若年性認知症者とその家族が発症から死亡する間に求められた意思決定の場面と、その際の意思決定、②その意思決定に周囲の人(医療・介護従事者、親戚、友人などを含む)が及ぼした影響と具体的な支援内容、また若年性認知症者本人、家族が求める支援との乖離の有無を明らかにする。そして③若年性認知症者と家族の意思決定支援モデルを開発し評価することである。

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.

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。

Report

(5 results)
  • 2023 Annual Research Report   Final Research Report ( PDF )
  • 2022 Research-status Report
  • 2021 Research-status Report
  • 2020 Research-status Report
  • Research Products

    (9 results)

All 2024 2023 2022 2021 2020

All Journal Article (4 results) (of which Peer Reviewed: 4 results,  Open Access: 4 results) Presentation (1 results) (of which Int'l Joint Research: 1 results) Book (4 results)

  • [Journal Article] Expressed Emotion in Families of People With Dementia: A Review of Scale-Based Measures2024

    • Author(s)
      Liu Xiaoji、Mo Wenping、Takiue Keigo、Kanaya Reiko、Takeya Yasushi、Koujiya Eriko、Yamakawa Miyae
    • Journal Title

      Journal of Gerontological Nursing

      Volume: 50 Issue: 2 Pages: 17-25

    • DOI

      10.3928/00989134-20240110-03

    • Related Report
      2023 Annual Research Report
    • Peer Reviewed / Open Access
  • [Journal Article] Communication-related experiences of individuals in the early phese of semantic dementia and their families : an interview study2023

    • Author(s)
      Shiba T, Yamakawa M, Endo Y, Komori K, Umezaki K Takeya Y, Shigenobu K, Tanimukai S
    • Journal Title

      Psychogeriatrics

      Volume: 23 Issue: 3 Pages: 466-474

    • DOI

      10.1111/psyg.12956

    • Related Report
      2023 Annual Research Report 2022 Research-status Report
    • Peer Reviewed / Open Access
  • [Journal Article] Experiences of families of people living with frontotemporal dementia: a qualitative systematic review2022

    • Author(s)
      Shiba Tamami、Yamakawa Miyae、Endo Yoshimi、Konno Rie、Tanimukai Satoshi
    • Journal Title

      Psychogeriatrics

      Volume: - Issue: 4 Pages: 530-543

    • DOI

      10.1111/psyg.12837

    • Related Report
      2021 Research-status Report
    • Peer Reviewed / Open Access
  • [Journal Article] Sustainable nurse‐led care for people with dementia including mild cognitive impairment and their family in an ambulatory care setting: A scoping review2021

    • Author(s)
      Yamakawa Miyae、Kanamori Takuya、Fukahori Hiroki、Sakai Ikuko
    • Journal Title

      International Journal of Nursing Practice

      Volume: - Issue: 3

    • DOI

      10.1111/ijn.13008

    • Related Report
      2021 Research-status Report
    • Peer Reviewed / Open Access
  • [Presentation] Perspectives of individuals with dementia after confirmation of their diagnosis of young- onset Alzheimer’s disease.2023

    • Author(s)
      Kaori Umezaki, Miyae Yamakawa, Tamami Shiba, Kazue Shigenobu, Yuto Satake, Manabu Ikeda and Yasushi Takeya
    • Organizer
      26th East Asian Forum of Nursing Scholars
    • Related Report
      2022 Research-status Report
    • Int'l Joint Research
  • [Book] 若年性認知症 多職種協働で取り組む生活支援2022

    • Author(s)
      山川みやえ,繁信和恵,長瀬亜岐,竹屋 泰 編
    • Total Pages
      176
    • Publisher
      日本看護協会出版会
    • Related Report
      2021 Research-status Report
  • [Book] 看護師のための 認知症患者さんとのコミュニケーション&“困った行動”にしない対応法2020

    • Author(s)
      堀内 ふき、浅野 均
    • Total Pages
      184
    • Publisher
      メディカ出版
    • ISBN
      9784840472753
    • Related Report
      2020 Research-status Report
  • [Book] 高齢者の健康と障害 第6版2020

    • Author(s)
      堀内 ふき、諏訪 さゆり、山本 恵子
    • Total Pages
      352
    • Publisher
      メディカ出版
    • ISBN
      9784840472081
    • Related Report
      2020 Research-status Report
  • [Book] 新体系 看護学全書 老年看護学 老年看護学概論/老年保健2020

    • Author(s)
      亀井智子
    • Total Pages
      250
    • Publisher
      メヂカルフレンド社
    • ISBN
      9784839233723
    • Related Report
      2020 Research-status Report

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Published: 2020-04-28   Modified: 2025-01-30  

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