Improving information provision in the memory clinic

Over the past decades, rapid advancements have been made in the diagnosis of dementia, in particular Alzheimer’s disease (AD). In addition, the patient population at memory clinics is shifting, with an increasing number of individuals presenting at earlier, predementia stages. These changes in patient demographics and increasing diagnostic possibilities require memory clinic professionals to develop additional skills in medical communication, e.g., explaining about diagnostic tests, distinguishing between types and stages of dementia, or providing prognostic information. Adequate information provision empowers patients to make informed decisions, enhances autonomy, reduces anxiety, facilitates involvement in treatment and care plans, manages expectations, and strengthens the clinician-patient relationship. Individuals with Subjective Cognitive Decline (SCD), a self-perceived decline in cognitive abilities without measurable cognitive deficits, account for approximately one quarter of those visiting memory clinics for diagnostic evaluation. However, research evaluating the perspectives and experiences of individuals with SCD, as well as the perspectives and needs of memory clinic professionals regarding this patient group, is scarce. This thesis focuses on improving information provision in the memory clinic, with a specific focus on individuals with SCD. We addressed three primary aims: (1) assessing the perspectives and experiences of memory clinic patients, care partners, and professionals regarding information provision during the diagnostic trajectory, (2) evaluating the need for and feasibility of supportive communication tools in memory clinic practice, and (3) informing early lifestyle and medical interventions for individuals with SCD. Our findings show that memory clinic professionals recognize the importance of communicating about (etiological) diagnosis, prognosis, and prevention, and personalizing this communication to characteristics and needs of individual patients. The information needs of patients vary by disease stage and evolve over time, emphasizing the importance of both personalization and timing. Particularly in SCD, shared decision-making plays a key role in aligning diagnostic procedures and the information provision with patients’ situations, needs, and preferences. Participants with SCD valued amyloid PET disclosure positively, regardless of amyloid status. The emotional and informational needs of individuals receiving amyloid PET results underscore the importance of follow-up. We identified a need for (online) tools that facilitate meaningful discussions between professionals, patients, and care partners about diagnosis, prognosis, prevention, and treatment of AD – helping to clarify patients’ preferences and needs. Digital tools, such as ADappt, have the potential to improve information accessibility, enhance scalability, and reduce unwarranted practice variation. However, successful implementation requires more than just the availability of tools; it demands tailored strategies, including communication skills training for professionals. Ultimately, information provision should not be seen as a standalone intervention but as an integral part of high-quality memory clinic care. The diagnostic trajectory in the memory clinic is complex and often marked by uncertainty. Throughout this journey, accessible, reliable, and personalized information is essential. Optimizing communication strategies and equipping both patients, care partners, and professionals with the necessary tools and knowledge are essential steps toward a more patient-centered approach and personalized care in memory clinics.