To bring greater attention to the often-unseen contributions of these family caregivers, the “Future Participation Conference” organized by the University of Hildesheim and the Hildesheim district focused on their perspective. The goal of the event was to highlight the significance of their contributions, raise awareness of the specific challenges faced by this group, and provide both family caregivers and professional stakeholders with concrete ideas for their daily lives and actions.

“There are no statistics on exactly how many family caregivers there are in Germany,” explains Prof. Dr. Anne Meißner from the Department of IT for the Caring Society at the University of Hildesheim, the event’s initiator and co-organizer. “Family caregivers are all those who regularly support a close relative in need of care. What they do and what that means for them is far too often overlooked.” Shopping, cooking, cleaning, managing financial matters, assisting with personal hygiene or mobility, doctor’s visits, medication management, and, last but not least, emotional support are just some aspects of caregiving. “The daily life of family caregivers is akin to managing a small family business,” as one participant at the Future Participation Conference aptly put it. The challenges associated with caring for family members range from burnout and isolation to risks to one’s own health, as well as socioeconomic risks, such as reduced working hours in one’s primary job. “Family caregivers are the invisible foundation of care. They do an enormous amount and far too often go well beyond their limits. Without their caregiving, the regional care system would not be sustainable. Yet far too many of them are working at their own breaking point, without social recognition, and at a high emotional, social, and health cost.”

Change starts with me

At the Future Participation Conference, around 55 people—including family caregivers and various stakeholders from the health and social services sectors—took on the perspective of family members. In addition to keynote presentations and the introduction of support services in the city and district of Hildesheim, the program included mini-workshops and discussion rounds. “The interactive group work put family caregivers and their concerns and needs at the center,” emphasizes Meißner. A thought that all too often prevails: I can’t change the situation. “We wanted to break through this sense of powerlessness through shared dialogue. Because even if the shortage of skilled workers and demographic trends cannot be changed by one person alone, everyone can find something over which they themselves have influence.” This includes becoming aware of one’s own situation, being mindful of one’s own needs, or seeking help. For professionals in the health and social services sectors, this means placing greater focus on family caregivers, making respite services more accessible and better suited to everyday life, and communicating in an appreciative manner. “Change is possible when everyone recognizes and utilizes their own opportunities to make a difference.” 

At the end of the day, participants were able to take valuable insights home with them. Establishing reliable routines, focusing on self-care, and accessing support services were just a few of the approaches mentioned. The participants also particularly emphasized the importance of exchange and mutual understanding. Raising awareness of shared challenges and discovering new avenues of support were seen as benefits: “Through sharing experiences, many realize they are not alone with their questions and concerns,” said Meißner.

The IT Department for the Caring Society at the University of Hildesheim intends to continue this collaborative effort: “The goal of upcoming initiatives remains to engage even more people in exchange, networking, and concrete support in order to effectively relieve the burden on family caregivers in their daily lives and strengthen a social, caring society.”