The CONT-END programme is funded by the European Research Council (ERC; Consolidator Grant agreement ID 771483) and comprises three Work Packages:
1. Perspectives on what types of care are acceptable at the end of life for patients with dementia
2. Effects of advance care planning in dementia
3. Decisions in end-of-life care research
Cognitive and physical decline in dementia at the end of life imply that control is typically lost. CONT-END will examine perspectives on future care in Work Package 1. We are studying four interventions that contain a controversial element of striving for control in the process of dying with dementia. The interventions are: 1 and 2) two approaches to advance care planning, 3) technology to monitor distress at the end of life, and 4) euthanasia. In six different countries, we examine if and to what extent the interventions, shown on animation videos, are acceptable to people with dementia, family caregivers and physicians.
Work Package 2 examines the effects of advance care planning on quality of life of patients with dementia and how family members experience the decision-making process. We train general practitioners in advance care planning, either with an approach aimed at making concrete treatment decisions, or in an approach focused on care goals and coping with an uncertain prognosis. We also follow people with dementia when they are admitted to a nursing home. We will investigate who benefits most from either approach of advance care planning.
In Work Package 3, we examine our and other research about the end of life. We explore researchers’ decision making; how researchers exercise discretion when navigating ambiguity in research practice. We expect this to will greatly benefit the quality and transparency of CONT-END. We also intend to develop a method that provides researchers with a way to reflect on their work, from the development of a research idea to publication of the results.
