Research project

Digital help for family caregivers

Due to demographic trends, the number of dementia patients will continue to increase.

(Bild: stock.adobe.com/Gabriele Rohde)

When a diagnosis of dementia changes your life: A research project led by Vorarlberg University of Applied Sciences aims to provide support for challenging care at home.

Maria and Herbert have just been retired for a few years when Herbert begins to change. At first it's little things - he forgets names, asks the same questions several times, misplaces his keys and wallet. But over time, the moments when he becomes disoriented and confused become more frequent. After several visits to the doctor, the diagnosis is made: early-stage dementia.

Maria is shocked and feels overwhelmed. What does this mean for her future? How can she best support Herbert? And where can she find help?

Overwhelmed by the disease
Many relatives of people with dementia feel this way at first. According to estimates, there are currently around 6000 people living with some form of dementia in Vorarlberg. This number could double by 2050. The disease poses enormous challenges not only for those affected, but also for their families. There is often a lack of knowledge about existing support services, which means that organizing care can quickly become overwhelming. This is precisely where the "TeleCareHub" research project at Vorarlberg University of Applied Sciences comes in.

Family caregivers often face complex and stressful situations. In addition to the physical and emotional strain, there is also the organizational challenge. "TeleCareHub" offers a digital service that provides information, networking with specialist staff and support.

"We want to strengthen the empowerment of family caregivers so that they are better prepared for their role. The initial interim results show that this can increase well-being and have a positive impact on the relationship between the carer and the person being cared for," explains project manager Katrin Paldán. The project brings together eleven partner organizations, including aks Gesundheit GmbH, Arbeitsgemeinschaft Mobile Hilfsdienste, Betreuungspool Vorarlberg, connexia, Aktion Demenz, Caritas and the Krankenpflegeverband. Five offers can be found on the homepage telecarehub.at: Learning and training opportunities, information on care at home, online discussion groups, advice for family caregivers and a stress check for early detection of excessive demands.

The initial interim results show that our project can increase well-being and have a positive impact on the relationship between the carer and the person being cared for.

Projektleiterin Katrin Paldán

Bild: FHV Bröl

Accompanying study on effectiveness
A pilot study, which is being carried out in collaboration with the Carinthia University of Applied Sciences, is investigating how family caregivers perceive and use the digital services. Participants from several federal states are testing the platform for up to six months and providing feedback on user-friendliness, acceptance and the concrete effects on their care experience. Those responsible hope that the digital service will help to relieve the burden on relatives and thus improve the overall care situation.

"In addition, early use of such services could also relieve the burden on the healthcare system in the long term," says Paldán optimistically. And that would be sorely needed: according to the Austrian Institute of Economic Research (WIFO), the rise in costs in the care sector will be considerable in the coming decades. The state of Vorarlberg expects care costs to rise by 427 percent by 2050 - incidentally, this would be the sharpest rise in costs in the whole of Austria.

Who is involved?

The "TeleCareHub" project is looking for participants who currently care for people with dementia or suspected dementia to at least a small extent and are at least 18 years old. A computer, laptop, tablet or smartphone with internet access is required for participation. The study lasts between three and six months. During this time, participants test the online platform and complete two questionnaires. Interested parties can contact the study team by e-mail ([e-mail]) or by telephone [phone]).

The research project also aims to address the different needs of family caregivers. "Partners of those affected need different support than working children. One of the biggest challenges is the serious change in the relationship between the carer and the person being cared for," says Paldán.

There is more help available than many people think
Although various support services already exist, they are not widely known. "For example, there are case and care managers as contact persons in every municipality in Vorarlberg. With 'TeleCareHub', we hope to contribute to better networking between family caregivers, those affected and regional service providers." However, there is still often a lack of suitable services, especially for younger people or working carers. "The double burden between work and care is a huge problem. Additional support services are urgently needed here," emphasizes the project manager.

 "TeleCareHub" is designed for the long term. Work on optimally adapting the platform to the needs of relatives will continue until 2026. In order to be able to operate the portal sustainably after that, funding opportunities are already being sought. The researchers hope that their work will contribute to a real improvement in the care of people with dementia.