Would you like to participate in digiDEM Bayern as a research partner? Or are you generally interested in the healthcare project? Here you’ll find the most important information:
- You are contributing to the improvement of the care and support situation
- You give a voice to those affected and act as a spokesperson
- You will receive information about the needs of affected individuals in your region and facility.
- You can exchange ideas with other research partners in Bavaria and expand your network.
- You will receive individual evaluations for your facility and region (e.g., for negotiations with payers).
- You have flexible working hours and receive compensation (expense allowance).
General principles:
The project is being carried out in cooperation with the Friedrich-Alexander-Universität Erlangen-Nürnberg, the University Hospital Erlangen, and the Medical Valley. It is funded by the Bavarian State Ministry of Health, Care and Prevention (StMGP) and is part of the Bavarian Dementia Strategy.
The project began in 2019. Surveys of people with dementia and their caregivers and family members began in the summer of 2020. A comprehensive survey covering the entire state of Bavaria is to be conducted over several years.
As a digital project, data protection is a top priority for digiDEM Bayern. The register data is pseudonymized and then transmitted encrypted, making it impossible to identify the surveyed individuals from the outside. The data protection concept was developed in the first quarter of 2020 by the scientific project management and reviewed by the official data protection officer of Friedrich-Alexander-Universität Erlangen-Nürnberg. By letter dated May 11, 2020, the Release of the Data Protection Concept was approved by the official data protection officer of the Friedrich-Alexander-Universität Erlangen-Nürnberg. Furthermore, the data protection concept was submitted to the Bavarian State Commissioner for Data Protection (BayLfD), who also reviewed and assessed it from a legal and organizational perspective. The legal framework does not provide for an approval or authorization of the data protection concept by the Bavarian State Commissioner for Data Protection. A list of contract processors can be found here.
You can conduct the surveys using standard PCs, laptops, or tablets. As a general rule, we recommend using the most up-to-date operating version on your devices for security reasons.
No special qualifications are required. Interviewers will receive training and should be familiar with interacting with people with dementia and have knowledge of the topic of dementia.
Research partners receive an allowance of 120 € per participant for screening, counseling, obtaining informed consent, and initial interview.
For each follow-up survey, research partners will receive an expense allowance of 90 € per participant.
Ein Einschlusskriterium ist ein Screening-Ergebnis von 15 bis 23 beim “Mini Mental Status Test” (MMST) oder von unter 24 Punkten beim “Montreal Cognitive Assessment” (MoCA). Zudem können nur Personen teilnehmen, die in häuslicher Umgebung leben und ihren Hauptwohnsitz in Bayern haben. Es werden alle Altersgruppen und Demenztypen gemäß der ICD-10-Klassifikation (F00-F03) berücksichtigt.
Exclusion criteria deafness, blindness, aphasia, or psychiatric diagnoses (excluding dementia)
Screening (MMST and MoCA Testing):
The screening serves to select suitable study participants. These are people with mild cognitive impairments and early-stage dementia.
Die Untersuchung möglicher kognitiver Beeinträchtigungen soll auf Basis des “Mini Mental Status Test” (MMST) durchgeführt werden. Dafür ist ein Zeitaufwand von ca. 10-15 Minuten einzuplanen. Bei einem Screening-Ergebnis von über 23 sollte zudem das Testinstrument “Montreal Cognitive Assessment” (MoCA) eingesetzt werden. Auch dieser Test dauert ca. 10-15 Minuten.
For each screening conducted as part of a Dementia Screening Day, you will receive 8 Euros per screening, regardless of whether it results in study participation. If a screening is negative, no entry in REDCap or completion of the participant data sheet is necessary.
You can find the billing form in the research partners“ internal area under the ”Post-Survey Follow-Up“ section, labeled ”Billing Form Screening Day Flat Fee.".
Surveys
For the initial consultation (including information and obtaining informed consent), please allocate approximately 1 to 1.5 hours.
The follow-up interviews take about 1 hour.
Follow-up interviews should be conducted at 6, 12, 24, 36, 48, 60, and 72 months.
Die Befragungen werden im persönlichen Interview durchgeführt. Die Antworten werden in die Register-Software “REDCap” eingegeben.
No minimum number of interviews is specified.
The participants will then no longer be surveyed. However, their data collected up to that point will be included in the study.
In this case, there is a questionnaire intended only for those affected.
