Gut beraten: Neue multimodale und standardisierte Beratungsmodelle für Menschen im Frühstadium einer Alzheimer-Erkrankung bzw. im Rahmen einer Demenzvorhersage
Funding:
Forschungsförderung 2019 der Deutschen Alzheimer Gesellschaft e.V. Selbsthilfe Demenz (DAlzG)
Grant Amount:
150.000 EUR (Gesamtprojekt)
Duration:
05/2020 – 06/2022
Project Participants:
- Prof. Dr. Silke Schicktanz – PI
- Julia Perry, M.A. – Research Associate
- Dr. Katrin Radenbach (UMG, Klinik für Psychiatrie und Psychotherapie) – Research Associate
- Felix Roth, cand. med. – Doctoral Student
Project Partners:
IEGUS - Institut für europäische Gesundheits- und Sozialwirtschaft (Benjamin Herten, M.A.)
Website:
https://beratung-demenz.de/
Research Background
Biomarkers make it possible to diagnose Alzheimer’s disease (AD) many years before the onset of first clinical symptoms. However, early diagnoses should be carefully considered: an abnormal test result can fundamentally change many aspects of an individual’s life and can also be psychologically burdening. Thorough counseling can help in deciding whether and to what extent such diagnostic tests are appropriate and helpful. Dementia prediction and presymptomatic diagnoses pose particular challenges for everyone involved. The German S3 guidelines on dementia issued by the German Society for Psychiatry and Psychotherapy, Psychosomatics, and Neurology (DGPPN) and the German Neurological Society (DGN) (DGPPN and DGN 2016) identified a need for the development of targeted counseling services for those affected and their families. The development and provision of counseling tailored to the target audience and quality-assured is also a central demand of the ad hoc working group in the “Dilemmas of Predictive Dementia Diagnostics” discourse process (2018; BMBF funding).
Research Topics
The research project aimed to develop and pilot a concrete, target-group-specific, quality-assured, low-threshold, and flexible information and counseling service, as well as training and continuing education modules for counseling experts. The project built upon existing international and national counseling frameworks for the early diagnosis of AD.
The pilot study investigated the following questions:
- What specific content should counseling services include?
- How can a multidisciplinary approach to counseling be implemented in clinical practice?
- How can the flexibility of the counseling environment (location of counseling and composition of the participants) be specifically accommodated?
- How can counseling be designed to be long-term and sustainable?
- What continuing education programs are needed for the various disciplines?
The project established an information and counseling hotline provided by a specialist as a support service for individuals with early-stage memory impairments and concerned family members. From January 2021 to October 2023, the Department of Psychiatry and Psychotherapy at the University Medical Center Göttingen (UMG), in cooperation with the Department of Ethics and History of Medicine at the UMG and IEGUS-the Institute for European Health and Social Economy offered the information and counseling hotline twice a week. The counseling sessions were subsequently evaluated scientifically on a voluntary basis. Evaluation interviews were conducted with affected individuals and their relatives using semi-standardized questionnaires. The collected data was qualitatively analyzed in pseudonymized form.
Research Aims
- The design of a practical counseling system with standards for risk assessment and early diagnosis based on the five criteria outlined in the joint statement by the ad hoc working group “Dilemmas of Predictive Dementia Diagnostics”: long-term, flexible, and formalized; multidisciplinary and open to family members; comprehensive; accessible and understandable; supportive.
- A concrete analysis of the social and statutory benefits framework conditions needing adaptation to improve counseling services for this patient group.
- The development of a continuing education module to train counselors to apply the designed counseling concepts and materials in memory clinics. In line with the objectives of the German S3 guidelines on dementia (2016) to train so-called dementia counselors.
Results
- Schicktanz, S., Alpinar-Segawa, Z., Ulitsa, N., Perry, J., & Werner, P. (2024). Moving Towards Ethical-Practical Recommendations for Alzheimer’s Disease Prediction: Addressing Interindividual, Interprofessional, and Societal Aspects. Journal of Alzheimer's disease: JAD, 101(4), 1063–1081. https://doi.org/10.3233/JAD-231137
- Perry, J., Brose, J., & Radenbach, R. (2023). Well Advised: The Need for Counseling in Early Stages of Alzheimer’s Disease. GeroPsych, 36(4), 189–202. https://doi.org/10.1024/1662-9647/a000318
- Radenbach, K. & Perry, J. (2021). Gut beraten bei beginnenden Gedächtnisstörungen. FÜNFZIG+Life. Südniedersachsen Printmagazin für alle ab fünfzig, 2021/03: 8.
- Radenbach, K. & Perry, J. (2021). Telefonische Unterstützung für Personen mit beginnenden Gedächtnisstörungen und besorgte Angehörige. Göttinger Tageblatt - Gesund in Göttingen, 2021/01.
- Perry, J. & Schicktanz, S. (2021). Konfliktfall Demenzvorhersage. Zum ersten bundesweisen Diskursverfahren über die Frage der Früherkennung. demenz.Das Magazin, 2021/50 | Thema: Demenz vorhersagen: Was wollen wir wissen? Mit welchen Folgen?: 22-23.
- Radenbach, K. (2020). „Man hat viel über die Alzheimer-Pathologie gelernt“ - Interview Dr. Katrin Radenbach. FÜNFZIG+Spezialthema. Südniedersachsen Printmagazin für alle ab fünfzig, 2020.
The Subprojects
Economic research conducted by IEGUS - the Institute for European Health and Social Economy