How You Can Actively Contribute to Improving Dementia Care
Anxiety, uncertainty, powerlessness – a dementia diagnosis represents a major turning point for those affected and their families. Not leaving them alone, but providing support, is a task for society as a whole. But what services are most urgently needed? What exists, what is missing? We want to find out – with your help: As a research partner, interview people with dementia and their relatives and loved ones about their situation! Only through your commitment can we gain an overview of care and potential gaps – and communicate them to policymakers. Help improve the living conditions for those affected in Bavaria!
Who can become a research partner?
As research partners, for example, out-patient nursing services, (dementia-friendly) pharmacies1, doctor's offices, counseling centers, specialist centers for caring relatives, memory clinics, self-help groups, sports groups, or day care facilities may be an option.
However, you can also conduct the surveys as individuals (volunteers, informal caregivers (private setting)).
1In the case of a cooperation with an institution in the pharmacy sector, only the holder of the operating permit, and not an employee of the pharmacy, can be the contractual partner..
What are my tasks?
You will approach individuals with MCI or dementia and their caregivers regarding study participation. After a brief screening and obtaining informed consent, you will interview participants for approximately 60 minutes and enter their responses into our database. The interviews will be repeated at 7 additional time points over the following 6 years (6 months, 12 months, 24 months, 36 months, 48 months, 60 months, 72 months after the initial interview).
What are the benefits for me as a research partner?
- 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).
Any other questions?
If we have piqued your interest or you have questions, please feel free to contact us!
Training Registration
If you would like to learn about their tasks as a research partner at digiDEM, you can register for our 90-minute online training. It takes place twice a month, is free of charge, and non-binding.
Project Update
As an active research partner, we offer you an overview of project news, follow-up surveys, and tips for participant recruitment in our 30-minute project update. We offer this once a month and it is free of charge.
We are already doing it
Rotraut Stein-Sommerfeldt, AWO District Association Upper and Middle Franconia e.V.
Bianca Mattern, GRANDMOTHER ANNA, Ruhstorf at the Rott
Birgit Hübner, Competence Center for Caregiving Relatives, Malteser Hilfsdienst e.V. Amberg
Additional supporters:
„The sustainable improvement of the situation for people with dementia and their relatives throughout Bavaria: this is the mission that the Bavarian State Association of the German Alzheimer Society and the digiDEM Bavaria project share almost literally. And precisely for this reason, we are wholeheartedly and unreservedly supporting the efforts of the digiDEM Bavaria project.”
„People with dementia live among us and are part of our communities. Often they live in seclusion and are quietly supported by relatives. The digiDEM Bavaria project aims to contribute to gaining more insight into their daily challenges and wishes. Therefore, the Dementia Hub of the Ostallgäu district is happy to actively participate in the establishment of a digital dementia registry and promotes broad participation among local dementia support organizations.„
„Rural areas will be particularly affected by aging and changing population dynamics in the future. These changes also increase the number of age-specific diseases, one of which is dementia. As the Netzwerk Pflege Stadt und Landkreis Hof, we consider it extremely important to support the digiDEM Bayern project so that tailor-made services for people with dementia and their relatives can be (further) developed and an overview platform can provide guidance.“
„The diagnosis of dementia fundamentally changes lives, the lives of those affected, but also the lives of their relatives. However, this disease is also a challenge for society as a whole. That's why, as the district of Landshut, we are happy to support initiatives like digiDEM Bavaria, which not only provide valuable support to those affected but also collect data to create a basis for further tailored assistance and services.“
„We are participating in digiDEM Bavaria because it requires people and partners who are interested in the further development of structures and who actively drive this development forward through their participation. Only when people are involved in this research project can the current situation be captured. Only then will we know where the needs or burdens of those affected and their family caregivers lie.“
„I am participating in digiDEM Bavaria because I am interested in studies like this as a dual nursing student. The more I know about dementia, the more I can help those affected and their relatives.“
„TnT GmbH is happy to participate as a research partner with digiDEM Bavaria because it is also our concern to optimize and improve the care of people in need of care. People in need of care and their relatives should participate in digiDEM Bavaria because home care situations are often very burdensome and can lead to social isolation. Scientific findings lead to concrete improvements and thus have practical benefits for those affected.“
„I'm participating in digiDEM Bavaria as a research partner to contribute to better care for people with dementia. Caregivers should participate in the project because they know their relatives who have dementia best.“
„Our care service considers participation in the ‚digiDEM Bayern‘ project to be a significant priority. We anticipate that by participating in basic research projects, future patients will be better supported. As a care service, we expect inspiration for better ways to address those affected and for assistance with daily life in a senior shared living arrangement. Relatives are the most important link with the closest access to those affected. Their support and care can contribute to slowing the progression of the diseases.“
(Photo: Sabine Helmer, M., with Christina Chmelirsch and Sebastian Meuer from digiDEM Bayern)
„We are participating in digiDEM Bavaria because we want to contribute to improving the living situation of people affected by dementia and their relatives, and also to engage more intensively with the subject of the disease than in everyday life. Furthermore, we want to contribute to advancing digitalization. Future generations will certainly be very tech-savvy and will also use emerging digital offerings.“
