Support for caring affiliates of people with dementia

Around 1.8 million people in Germany live with dementia—most of them are cared for by affiliates. A new research project led by the University of Jena is focussing on caring affiliates and offering them preventative psychotherapeutic support. The »AnDem-RoSe« project and its scientific support are being funded by the Innovation Committee of the Joint Federal Committee with a total of around three million euros. The aim is to reduce psychological stress and develop sustainable care structures.

High burden on caring affiliates

In most cases, care and support for people with dementia takes place at home and is provided by affiliates over many years. They provide support in everyday life, organise visits to the doctor and provide support during periods of disorientation. This often happens alongside work, family and other commitments. The constant responsibility can lead to considerable psychological stress—including exhaustion, depressive symptoms or harassment.

This is where the research project »AnDem-RoSe« (resource realisation and self-help for caring affiliates of people with dementia) comes in. Under the direction of Prof. Dr Gabriele Wilz from the Institute of Psychology at the University of Jena, the project team is testing a preventative psychotherapeutic support programme for particularly stressed caring affiliates. »With AnDem-RoSe, we want to teach strategies that reduce stress and promote the well-being of affiliates in the long term«, says Prof Wilz, who has been involved in supporting carers for many years as a researcher and psychotherapist.

Psychotherapeutic counselling and an online self-help tool

Around 350 people will take part in the study over the next four years. They will receive the tender of twelve psychotherapeutic counselling sessions, which can take place either by telephone or video call. The topics covered include understanding illness-related changes, dealing with exhaustion, worries and feelings of guilt as well as developing self-care activities in everyday life.

The tender is supplemented by an additional online self-help tool. To test its effectiveness, the study participants are randomly assigned to an intervention or control group. After six and twelve months, the study team will analyse the extent to which the participants' psychological stress has been reduced.

Broad-based consortium for sustainable care

In addition to the University of Jena, several consortium partners are involved in the project: Robert Bosch Gesellschaft für medizinische Forschung mbH, MSB Medical School Berlin and the Centre for Health Economics Research Hannover at Leibniz Universität Hannover. In addition, health insurance companies and practice partners such as interest groups and regional Alzheimer’s associations are involved in order to reach harassed affiliates in a targeted manner.

Cooperation with care insurance companies plays a central role—in particular with AOK Bayern as a further consortium partner. »Almost 80 per cent of people in need of care are cared for at home—a large proportion of whom are cared for by affiliates. In addition to the physical strain, this is also a mental challenge for which they urgently need support«, says Alexandra Krist, Head of the Care Division at AOK Bayern. »This is exactly where our joint digital care project comes in.« In the long term, »AnDem-RoSe« is intended to help ensure that innovative support services are systematically integrated into the care of caring affiliates.