The Bavarian Digital Dementia Register (digiDEM Bayern) is introducing a new digital offering. The new online questionnaire „digiDEM Bayern DEMAND" helps people with dementia and their caregivers and relatives.®“, to recognize their own care needs. At the same time, the questionnaire provides a concise overview of a wide range of support services that offer precise information. Scientists from Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU) developed the research tool as part of the establishment of a digital dementia registry and are now making the online questionnaire publicly available. The goal of the dementia registry is to enable effective and regional care planning in Bavaria with scientifically validated data.
Dementia is considered one of the main triggers for the need for care among older adults, who are mostly cared for at home by relatives. As dementia progresses, so does the need for care. Relatives and loved ones caring for them often face a significant challenge: how can the increasing need for care be met? For example, is a domestic helper needed to clean, do laundry, or cook, or a person to assist with daily dressing and undressing, as well as dental hygiene? Should short-term care in a residential facility be considered for the person affected? Or is it recommended for the relatives and loved ones providing care to attend a special care course?
„Many questions surrounding the care of people with dementia can be answered with the help of various support services. However, not every caregiver knows what services exist or what kind of help is needed in different situations,“ explains Nikolas Dietzel, research associate at digiDEM Bayern. He is the lead author of the scientific publication* on the „digiDEM Bayern DEMAND" questionnaire.®“ and is primarily responsible for its development.
Recognize your own needs within 15 minutes
With the help of the developed questionnaire „Dementia Assessment of Service Needs - DEMAND®“can anonymously and within 15 minutes, the individual needs for special support services of people with dementia and their caregivers can be identified. The questionnaire relates to a total of 16 support services, the use and need for which are inquired about.
These include, for example, services such as general practitioner care, the acquisition of aids such as hearing aids or visual aids, psychosocial measures such as memory training, counseling services (for example, regarding the use of social benefits), and housing options such as dementia shared apartments or assisted living. „External support services effectively reduce the burden on caregivers and enable people with dementia to remain in their familiar home environment for as long as possible,“ knows Prof. Dr. Peter Kolominsky-Rabas, co-author of the publication and project manager of digiDEM Bavaria.
Special Feature: A bouquet of tailor-made support services
The „digiDEM Bavaria DEMAND" questionnaire®“ is a distinctive feature. As a result of the online survey, the questionnaire offers a bouquet of different support services. „We ask about which services are individually and concretely used and which are needed,“ explains Nikolas Dietzel. „This way, participants receive tailored tips with detailed explanations of individual support services and further information.“
In addition, unlike other instruments, the scientific evaluation tool also collects the reasons for not using a service. Those who go through the questionnaire will provide information on whether they need a specific service, whether the offer is available in their region, and whether the support service is known at all.
The questionnaire „digiDEM Bayern DEMAND®“offers users a special advantage: The individual results can be downloaded and printed as a clearly designed PDF document. This document can then be used, for example, to visit a „Specialized Center for Dementia and Care“ in their district, a local „Specialized Center for Caregivers,“ or other local counseling services with family members and relatives, and to discuss the results with the professionals there. As an additional guide, at the end of the online questionnaire, there is a link to various points of contact for everyday support as well as information on financing support services.
Expose supply gaps
The questionnaire digiDEM Bayern DEMAND was developed®“ as part of the digiDEM Bavaria project. digiDEM Bavaria is establishing a digital dementia registry for Bavaria, among other things, to better understand the long-term progression of the disease.
„We are obtaining fundamental data that healthcare decision-makers can use for effective, targeted, and regional care planning. At the same time, we are identifying care gaps,“ says Prof. Dr. Peter Kolominsky-Rabas. „The research findings are therefore of great importance for people with dementia and their caregivers.“
In the run-up to consulting those affected
The digital DEMAND questionnaire, now being presented, also offers benefits for those affected. Prior to its publication, Nikolas Dietzel and his team extensively surveyed 183 participants, including dementia care nurses, dementia counselors, scientists, people with dementia, and their family caregivers. They evaluated, among other things, the general comprehensibility of the questionnaire, its readability, and the perceived importance of various support services.
The original scientific publication appeared in the renowned journal Journal of Alzheimer’s Disease in 2022:
Dietzel N, Graessel E, Kürten L, Meuer S, Klaas-Ickler D, Hladik M, Chmelirsch C, Kolominsky-Rabas PL: The Dementia Assessment of Service Needs (DEMAND): Development and Validation of a Standardized Needs Assessment Instrument. J Alzheimers Dis. 2022 Sep 27; 89(3): 1051-1061. DOI 10.3233/JAD-220363.
Here's the scientific publication.
Here you can access the new online questionnaire „digiDEM Bayern DEMAND"®“.
