Lieselotte "Lilo" Klotz, member of the European Working Group of People with Dementia, asks "Is there adequate dementia care in our communities?"


Dementia is one of the most common causes of long-term care in Germany and forecasts currently predict around 2.8 million people with dementia by 2050. Dementia is therefore automatically an immensely high financial, social and physical stress component in home care and our entire care system. But not only in Germany. Additionally, is the perception that due to the stigma, a documented diagnosis is only made in the 3rd or even 4th year of dementia. To make matters worse, in Germany we have the problem that dementia is often not recognised or is misdiagnosed. According to estimates, this happens to about half of all those affected. Those who fall ill earlier are most often affected by this problem and the path to the correct diagnosis is like running the gauntlet, sometimes for years. The direct consequences for those affected are that there are no appropriate therapies and no appropriate and necessary acceptance, as well as no care and support in the professional or private environment or the financial, social, cultural, and psychological areas of life. The general public and above all politicians would do well to deal intensively with this topic.

The burning question arises: "Is there adequate dementia care in our communities in our country?" My first and spontaneous impulse is a clear and emotional NO. But my second thought concerns the obligation to bring or collect. In my world with dementia, as a caring relative and also as a person affected, I have only experienced the principle of "being left alone". Targeted and person-centred advice, support, help and information are the exception rather than the rule. Not only are those affected and their loved ones left alone with the fact that they have a life-limiting illness; there is also no first "guideline" that helps to meet the new and diverse requirements and burdens. Everyone has to find out for themselves which public contact points, organisations or registered associations offer help, services, advice and support. Often through lengthy and time-consuming research on the internet, at events or through information and mediation from friends, acquaintances or other affected persons. Those affected and their relatives are often not sufficiently informed about the condition. Ironically, at a time when those affected and their families are already in an absolute state of emergency, they have to perform at their best to find out and master everything in the administration and information jungle (an application for a pension, the disability card, the pension office, various medical appointments, memory clinics, requirements of the health and care insurance companies, state of research, medication...)

There is very little space and time for soul and humanity. There is no first “compass” or care management. A single point of contact, a coordinating hub, would be more than helpful for those affected and caring relatives. In any case, this support should be made available by the doctors and clinics, to those affected. Unfortunately, those named only feel partially responsible. They also often do not have the appropriate knowledge and relevant information. Financial and time resources are more than limited and the necessary media, but also media skills, are simply not available to be able to cope with such a task. Around 135 care centres in Germany offer free and non-binding advice close to where you live. Unfortunately, very few people know that they have the task of improving the information and advice offered by the various social service providers on all aspects of care and of coordinating the care and support offers close to home, as well as the social help and support offers (e.g. also the placement of care services, domestic help and shopping service). That's the theory! Unfortunately, in the real world, these care centers are chronically underfunded and understaffed.

The consultants are chronically overworked and free appointments are rare. As is so often the case in our health and care system, there is a large gap between the representation given by politicians and the health care system, and the real experience in which those affected and their caring relatives have to live (survive). The fact is that our entire social, political, sporting, cultural and social life, so far - in most German municipalities - has only touched the surface of experiences and projects with the defined goal of actively involving and supporting people with dementia and their relatives. It is important to counteract the existing stigma and to stimulate a change in awareness towards a new social coexistence. Dementia is a social challenge and at the same time an opportunity to make our living environment a "warmer place" for people with and without dementia. Everyone can participate - that would be the first step towards a dementia-friendly community.