Well Advised: The Need for Counseling in Early Stages of Alzheimer's Disease

Abstract

Societal and scientific interest in the prediction and early diagnosis of Alzheimer's disease is growing. However, decisions regarding early diagnosis must be well-considered. The decision-making process requires specific counseling for concerned individuals, which is currently missing. In our project "Well Advised", we investigate the needs and expectations of people concerned about their memory regarding counseling services in Germany. Using a mixed-methods approach, we analyze the evaluative interviews from telephone counseling (n = 44) and one expert focus group with 4 participants. Our evaluation shows a great need for information; the low-threshold telephone counseling service is appreciated. The topics of interest of those seeking advice concern medical-ethical issues of autonomy, the right (not) to know, and risk-benefit considerations. From these findings, we developed a training module and counseling guideline.