PI: Dr. Anja Staiger, Entwicklungsgruppe Klinische Neuropsychologie (EKN), Institut für Phonetik und Sprachverarbeitung (IPS), Ludwig-Maximilians-Universität (LMU) München

Team members: Prof. Dr. Janine Diehl-Schmid, Nora Hoen

Collaborator: Prof. Dr. Matthias Schröter, Universitätsklinikum Leipzig AöR, Klinik für Kognitive Neurologie

Funding: DFG (German Research Foundation)

Term: until 2022

Motor speech disorders (dysarthria, apraxia of speech) are ascribed a high predictive value for the underlying pathology and the course of the disease in primary progressive aphasia (PPA). The overarching goal of the proposed project is to extend knowledge of the motor speech disorders in PPA, contributing to a better understanding of the neurodegenerative disease and to further advances in clinical assessment and treatment.

The study comprises two major parts. First, we will investigate data from an existing sample of more than 100 patients with PPA of all subtypes from the German Research Consortium of Frontotemporal Lobar Degeneration (retrospective study). The database comprises speech recordings as well as study MRIs from each participant. Neurophonetic analyses will be performed with expert raters blinded for PPA subtype (nonfluent, semantic, logopenic variant). The primary objectives of this subproject are the unbiased assessment of the prevalence of motor speech disorders in PPA (dysarthria syndromes, apraxia of speech, mesiofrontal speech motor syndromes) according to standardized criteria, and the identification of their neuroanatomical substrates.

Second, we will collect speech data from 40 further patients with different variants of PPA (prospective study). Our aim is to study these patients’ speech profiles more comprehensively by using a number of well-established instruments specifically developed for the assessment of neurogenic speech disorders, and thereby to implement new diagnostic standards in the clinical assessment of motor speech disorders in PPA. Moreover, the speech data obtained in this way provides the basis for answering further important research questions: For the first time it will be possible to compare the speech profiles of PPA patients with those of patients with dysarthria or apraxia of speech following other degenerative or non-degenerative diseases. For this purpose, we can access an existing database of more than 300 patients with dysarthria and more than 150 patients with apraxia of speech from the Clinical Neuropsychology Research Group (EKN database). Using classificatory approaches, we will also be able to investigate phonetic variables that can contribute to the intricate differential diagnosis of nonfluent and logopenic variant PPA. This study aims at providing, for the first time, an in-depth knowledge of motor speech disorders in German-speaking individuals with PPA.

Study title: EPYLOGE: IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany

PI: Prof. Janine Diehl-Schmid

Coworkers: Dr. Julia Hartmann, Dr. Carola Roßmeier, Dr. Lina Riedl, Julia Fischer

Project partners: Prof. Dr. Dr. Ralf Jox, Institut für Ethik, Geschichte und Theorie der Medizin, LMU München & Centre Hospitalier Universitaire Vaudois, Lausanne; Helga Schneider-Schelte, Deutsche Alzheimer Gesellschaft, Dr. Victoria Kehl, Institut für Medizinische Statistik und Epidemiologie, TU München, Dr. Silvia Egert, Münchner Studienzentrum, TU München

Funding: BMBF (Federal Ministry of Education and Research)

Term: 2017 - 2020

International Advisory Board: Prof. Dr. C. Bausewein, München; Prof. Dr. F. Riese, Zürich, Prof. Dr. N. Lautenschlager, Melbourne; Dr. Liz Sampson, London; Prof. I. Holmerova, Prag; Dr. J. van der Steen, Leiden

Summary: From a scientific view, palliative care issues in dementia are neglected in Germany. Neither in Germany nor internationally research has been conducted on palliative care issues in YOD, although significant differences compared to LOD are expected. Most international studies have focused on patients in long term care (LTC) facilities but have neglected patients that are cared for at home. We hypothesize that in advanced and terminal stages of YOD and LOD unmet care needs exist and that they differ between YOD and LOD. By prospectively assessing and surveying 200 patients with YOD and LOD in advanced stages who are cared for in LTC facilities and at home and investigating circumstances of death of 100 YOD- and LOD-patients, it is possible 1) to describe symptoms and management, health care utilization, palliative care provision, quality of life and death, elements of advance care planning, family caregivers' needs and satisfaction; 2) to compare YOD and LOD; 3) to develop expert-consensus recommendations derived from study results for the improvement and implementation of strategies and interventions for palliative care provision.  4) to communicate the recommendations nationally and internationally in order to improve and adapt guidelines, to implement the recommendations into daily practice and to give a basis and perspectives for future research projects; to communicate the results to patients and their families in order to counsel and support them in their decision making processes and their dialogue with professional caregivers and physicians.

IPA-Symposium, Rome, Italy 2018

As a consequence of demographic change dementia is becoming a growing challenge for the health and social systems in all countries of the Danube region. To tackle this challenge some regions are not optimally prepared. The most frequent shortcomings include (1) insufficient knowledge and (2) poor cooperation among occupational groups involved in dementia care, as well as (3) lack of dementia-specific facilities such as day care centres or special care units in nursing homes.

Co-funded by the European Union as part of the INTERREG-Danube Transnational Programme, the project INDEED (INnovation for DEmentia in thE Danube Region; duration 1.7.2018 – 30.6.2021) is an initiative comprising 20 partners from 10 countries. Its overall objective is to contribute to the improvement of dementia care in the countries of the Danube region and to the implementation of national dementia plans. To this end the project adopts a top-down strategy. INDEED aims at strengthening competences, cooperation and innovation potential of relevant institutions (occupational education and training, policy makers, professional boards, municipal administrations, charities, nursing home operators, social enterprises and start-ups). Through capacity building at the institutional level the project seeks to achieve a broad and sustainable improvement of care practice involving all relevant actors.

For the above institutions three modules will be developed:

  • CAMPUS – a program of interprofessional education to enhance dementia-related knowledge and competence (targeting deficit 1);
  • CONNECT – a networking tool to support interprofessional and interinstitutional cooperation (targeting deficit 2);
  • COACH – business counseling to stimulate entrepreneurial activity in the filed of dementia care (targeting deficit 3).

The three modules will be elaborated in traditional (presentations, seminars, printed documents) and internet-based formats (multimedia platform) as well as evaluated in pilot actions at selected sites. In collaboration with decision makers from ministries and public administrations the modules will be adjusted to practical and local needs. Finally, the intervention package will be provided to all interested stakeholders within and beyond the project region.

Project partners: Austria: The Brain Company, Gmunden; Vienna University of Economics and Business, Vienna Bosnia and Herzegovina: Association AiR, Sarajevo; Ministry of Health of the Federation of Bosnia, Sarajevo. Bulgaria: Medical University of Sofia; Bulgarian Alzheimer’s Association, Sofia. Croatia: University of Zagreb; City of Zagreb; Ministry of Health of the Republic of Croatia, Zagreb. Czech Republic: National Institute of Mental Health, Prague; MediWare Medical Engineering, Prague. Germany: Klinikum rechts der Isar of Technical University Munich; Bavarian State Ministry of Health and Care, Munich; Bavarian Research Alliance, Munich; German Alzheimer’s Association, Berlin. Hungary: Social Cluster Association, Budapest. Romania: Romanian Alzheimer’s Association, Bucharest. Slovak Republic: Memory Centre Bratislava; Slovak Medical Association, Bratislava; Slovenia: University of Ljubljana.

Coordinator: Prof. Dr. Alexander Kurz (a.kurz(at)tum.de)

Project Manager: Lea Pfäffel, M.Sc. (lea.pfaeffel(at)tum.de)