Earlier this year, German newspaper Ärztekammer Nordrhein published an article about Lieselotte Klotz, Vice-Chairperson of the European Working Group of People with Dementia, titled "Ein Abschied Stück für Stück" ("A farewell piece by piece") about the challenges of Lewy Body Dementia in younger patients. To read the original article in German, see: https://www.aekno.de/aerzte/rheinisches-aerzteblatt/ausgabe/artikel/2025/februar-2025/ein-abschied-stueck-fuer-stueck
Lilo has translated this article into English, to share with Alzheimer Europe's readers: The article "A Farewell Piece by Piece" from the Rheinisches Ärzteblatt (February 2025) highlights the story of Lieselotte Klotz, a 64-year-old woman who has been living with Lewy Body Dementia since 2017. While this form of dementia is typically diagnosed in older individuals, more and more people under the age of 65 are also being affected. Lieselotte’s experience serves as a powerful example of the challenges younger dementia patients and their families face. Her personal story and her dedication to advocacy underscore the urgent need for specialized care tailored to younger dementia patients.
Lieselotte’s Journey with Lewy Body Dementia
Lieselotte Klotz, a vibrant and engaged woman, was once the CEO of an IT company and led an active life. However, her diagnosis in 2017 changed everything. "It started with hallucinations that I initially didn’t take seriously. I thought I was experiencing burnout," Klotz recalls. But the symptoms intensified: she struggled to understand documents she had created, lost track during meetings, and failed to recognize long-time business partners.
The diagnosis of Lewy Body Dementia was a harsh blow. "I resisted for a long time, but eventually, I had to accept that my life would never be the same," she says. Losing her job and being forced into early retirement was a severe blow to her. "I felt useless," Klotz admits. In addition to the physical challenges of hallucinations, balance issues, and gait problems, Klotz also faced the social consequences of her disease. She explains how friends distanced themselves and how she was often reduced to her illness. Yet, Lieselotte refuses to give up. "The biggest challenge is to consciously experience my health deteriorating. But I try not to lose my zest for life," she explains. With "radical acceptance," she faces her condition and engages in several initiatives to raise awareness about dementia and help destigmatize it.
The Situation of Younger Dementia Patients
The article also underscores that dementia in younger people is often diagnosed too late. In Germany, only about five percent of the 1.8 million dementia patients are under 65. Professor Dr. Frank Jessen, a specialist in psychiatry and psychotherapy, explains that it is often difficult to diagnose younger patients early. "Younger people are often still active in their professions, and their symptoms are easily overlooked or misinterpreted," says Jessen. Early diagnosis is critical, as the disease can dramatically shorten life expectancy, and early interventions, such as using antibody therapies, could help slow the disease's progression and improve quality of life.
Lack of Support for Young Dementia Patients
The needs of younger dementia patients are very specific and cannot be met by general care offerings aimed at older individuals. Many young dementia patients still have children to care for or are professionally active, which makes diagnosis and managing the disease even more complex. The German Alzheimer Society calls for better networking between memory clinics, family doctors, and counseling centers to improve early diagnosis and enhance support for these patients. One noteworthy initiative highlighted in the article is the "JaDe" project in North Rhine-Westphalia, which specifically targets younger people with dementia and their families. It offers weekend workshops and other formats that provide essential information on topics such as preventive care, personal assistance, and balancing work with the illness. Such initiatives are desperately needed to ensure better support for young patients.
Lieselotte’s Advocacy and the Look to the Future
Despite her own limitations, Lieselotte Klotz is actively working to improve the lives of dementia patients. She is involved in several organizations, giving talks, supporting research projects, and advocating politically. "I want to raise awareness and help society understand that dementia is not just the end of life but a disease with which one can still live actively," she says. Lieselotte herself makes use of technology to organize her daily life. She has made her home wheelchair accessible and uses smart home technologies to make life easier. She emphazises the importance of utilizing tools and overcoming the pride of asking for help when needed.
Conclusion
Lieselotte’s story is a poignant example of the challenges and possibilities facing younger dementia patients. It is urgently necessary to improve care and support for this group of patients, both medically and socially. The work of Lieselotte Klotz and others demonstrates that it is possible to live a fulfilling life despite the diagnosis, as long as proper support systems are in place. It is crucial to raise awareness of the specific needs of younger dementia patients and adapt care structures accordingly. Only then can we ensure that young people with dementia receive the support they need to live as independently as possible.
