Studies show that this group is at a substantially higher risk of mental health problems than the general population. This is precisely where a new research project by the German Center for Mental Health (DZPG), based at the Tübingen and Berlin–Potsdam partner sites, comes in. Its goal is to investigate the burden and needs of informal caregivers and translate these findings into the healthcare system. The aim is to protect and strengthen the mental health of family caregivers.
The list of risks faced by caregivers is extensive. A meta-analysis shows significantly elevated rates of depression, while analyses by the Robert Koch Institute indicate that informal caregivers frequently suffer from stress, exhaustion, and psychological distress. Despite these findings, informal caregivers are not yet recognized as a distinct target group within mental health services.
Making Burden Visible, Improving Care
The DZPG VISIONS project “InnoCare: Stress, Mental Health and Resilience in Informal Family Care”, led by Dr. Lydia Kogler together with Dr. Caroline Meyer and lived experience expert and co-researcher Heike Petereit-Zipfel, will start in July.
The project follows a participatory approach, with family caregivers actively involved in the research. The first step is a large-scale online survey across German-speaking regions. It will systematically assess how frequently mental health conditions such as depression, anxiety disorders, substance use disorders, and trauma-related stress occur among caregivers, as well as identify areas where support is needed.
The project explicitly addresses the diversity of informal caregiving, including relatives caring for older or dementia-affected individuals, parents of children with care needs, and young carers, meaning children and young adults who take on caregiving responsibilities.
“Family caregivers play a central role in the care system, often over many years and under significant strain,” says Dr. Lydia Kogler. “We want to better understand which factors influence their mental health so that targeted support services can be developed.”
“Constant Strain Without a Break”
A member of the Trialogical Central Council who herself cares for both parents describes the experience:
“Care never stops. It runs alongside work and family life, often even at night, long after your own energy is gone.”
She highlights the difficulty of dealing with acute crises:
“When things become really difficult, you would need immediate support. Instead, you are often left alone or lose valuable time with responsibilities and paperwork. What is missing is straightforward, local support, including short-term help so that situations do not escalate.”
Heike Petereit-Zipfel adds:
“From different perspectives, I see every day how strongly our system still relies on the silent commitment of families without systematically providing them with the support they urgently need themselves. InnoCare addresses exactly this gap. It makes visible what has long remained invisible and integrates lived experience as an equal part in developing solutions. For me, this is not a ‘nice to have’ but a necessary prerequisite for a sustainable care system.”
Participation as a Key to Better Solutions
These experiences will be systematically collected within the DZPG VISIONS project. A symposium is planned for spring 2027, bringing together family caregivers with professionals from psychotherapy, medicine, social work, outpatient care, health insurance, and policy.
“We deliberately bring together different perspectives, those affected, care providers, and system stakeholders,” says Dr. Lydia Kogler. “We are convinced that only solutions developed jointly with all stakeholders can work in everyday practice.”
Strengthening Prevention, Rethinking Care Systems
In the long term, the project aims to develop preventive structures that can reduce psychological strain at an early stage by identifying needs more effectively.
DZPG spokesperson Prof. Peter Falkai emphasizes the need for action in healthcare provision:
“Family caregivers usually only come into focus once a disorder has already developed. We need to reach this group earlier and systematically include them in prevention and care.”
Prof. Silvia Schneider, spokesperson for DZPG, adds:
“With the VISIONS projects, DZPG creates space for research that can respond flexibly to developments of high societal relevance. Especially in areas such as the mental health of family caregivers, we need to quickly understand where risks arise, which forms of support are effective, and how new insights can be translated into prevention and care. Such projects provide impulses so that research does not only describe problems but actively drives improvements.”
A Growing Challenge
The Federal Statistical Office has also projected that, due to demographic change, the number of people in need of care will continue to rise, and with it the number of family members taking on caregiving responsibilities.
“This means many people will find themselves in a caregiving role at some point in their lives,” says Dr. Lydia Kogler. “That is why it is urgent to develop structures through research that support these people from the very beginning, reliably, accessibly, and effectively.”
Press Contact
Dr. Pavel Radchenko
0151 70125839
presse@dzpg.org
