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Background <p>Dementia is a terminal illness and places significant burden on individuals and their caregivers, especially regarding end-of-life decisions for people with dementia (PwD) who lose their decision-making capacity. Current advance healthcare planning concepts fail to consider the psychological processes of decision making. Supported Advance Care Decision-Making (ACD) is a promising approach aiming to enrich existing advance healthcare planning concepts by integrating empowering support strategies and ensuring the success of empowerment. The study aims at providing a feasible and effective approach to enhance ACD in dementia care practice with the goal to increase PwD’s autonomy in making advance care and end-of-life decisions and to reduce proxy burden. It is embedded within Dementia Care Management (DeCM), a routine care measure specifically designed for PwD who live at home.</p> Methods <p>The efficacy of supported ACD incorporated in DeCM routine care will be investigated with a single-blind randomized controlled trial. The primary endpoints are the prevalence and validity of advance healthcare planning documents (advance directives or other) and proxy burden at pre vs. post measurement. The secondary endpoints are decisional conflict, patient autonomy, and patient-proxy congruence in preferences.</p> Discussion <p>Depending on the results, supported ACD shall be added to the curriculum of DeCM to further increase its effectiveness.</p> Trial registration <p>DRKS00036478, 17.04.2025.</p>

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Project DECIDE II: evaluating the efficacy of supported advance care decision making within routine care in dementia: a randomized controlled trial

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2025年10月8日

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  • Ermioni Athanasiadi,
  • Jochen René Thyrian,
  • Janina Florack,
  • Anna Theile-Schürholz,
  • Jonas Karneboge,
  • Tanja Müller,
  • Kristian Kleinke,
  • Stefanie Kremer,
  • Charlotte Boes,
  • Helene Böhm,
  • Anja Herder-Peyrounette,
  • Manuela Kremer,
  • Celina Sander,
  • Ronja Müller-Späth,
  • Heiko Ullrich,
  • Melanie Boekholt,
  • Marc Hassenzahl,
  • Ruben Albers,
  • Simon Forstmeier,
  • Philipp Schaper,
  • Julia Haberstroh

摘要

Background

Dementia is a terminal illness and places significant burden on individuals and their caregivers, especially regarding end-of-life decisions for people with dementia (PwD) who lose their decision-making capacity. Current advance healthcare planning concepts fail to consider the psychological processes of decision making. Supported Advance Care Decision-Making (ACD) is a promising approach aiming to enrich existing advance healthcare planning concepts by integrating empowering support strategies and ensuring the success of empowerment. The study aims at providing a feasible and effective approach to enhance ACD in dementia care practice with the goal to increase PwD’s autonomy in making advance care and end-of-life decisions and to reduce proxy burden. It is embedded within Dementia Care Management (DeCM), a routine care measure specifically designed for PwD who live at home.

Methods

The efficacy of supported ACD incorporated in DeCM routine care will be investigated with a single-blind randomized controlled trial. The primary endpoints are the prevalence and validity of advance healthcare planning documents (advance directives or other) and proxy burden at pre vs. post measurement. The secondary endpoints are decisional conflict, patient autonomy, and patient-proxy congruence in preferences.

Discussion

Depending on the results, supported ACD shall be added to the curriculum of DeCM to further increase its effectiveness.

Trial registration

DRKS00036478, 17.04.2025.