Shared Decision Making after early diagnosis of Alzheimer's disease

• Applicants: Professor Dr. Johannes Hamann; Professor Dr. Georg Marckmann, since 8/2018
• Subject Area: Public Health, Healthcare Research, Social and Occupational Medicine
• Term: from 2016 to 2020
• Project identifier: Deutsche Forschungsgemeinschaft (DFG) - Project number 318280764

Recently, research has made important progress with regard to the early diagnosis of Alzheimer's disease (AD). However, there is a problematic gap between an ever earlier (or even predictive) diagnosis and the limited therapeutic options. One of the main purposes of early diagnosis is therefore to offer timely access to information, advice, and support along with access to a pathway of effective intervention and care. Thus, it is assumed that patients may benefit from knowing about their disease and its prognosis early so that they can decide on their treatment and make plans for their future as long as they are still capable of doing so. However, there is evidence that few individuals who receive an early diagnosis of AD actually use the possibility of making plans in advance (e.g. for future care and treatment) but rather postpone these decisions until decisional capacity is impaired. Thus, clinicians and relatives are often faced with the problem of substituted judgement (trying to determine the patient's presumed preferences), and respect for patient autonomy is often jeopardized. We propose a the development and piloting of a prospective decision support intervention (pDSI) for individuals with an early diagnosis of AD and their relatives. This intervention is based on the concepts of both Advance Care Planning and Shared Decision Making. The two principal investigators have collected experiences with both concepts in diverse medical contexts. In addition, they have already performed a qualitative pilot trial that has been the groundwork for this present proposal. We see the present proposal as a first step of a lengthy development-evaluation-implementation process. In the present proposal we first aim at developing the intervention within an iterative process and then at piloting and evaluating the intervention using a pre-post design and a mixed-methods approach.

• DFG Programme: Research Grants
• Ehemaliger Antragsteller: Privatdozent Dr. Ralf Jürgen Jox, until 8/2018