Disclosure of the diagnosis of dementia and support for patients and caregivers

Before the disclosure of the diagnosis, both the patients with dementia and their relatives experience a long time not only full of insecurity, uncertainty, fear and misgivings but also of conflicts. The beginning of a neurodegenerative disease is always associated with a lot of open questions. If young patients are still active in their professional life, already the stage of "Mild Cognitive Impairment" will cause mistakes, burnout, mobbing, depression and sick leaves. In the partner relationship conflicts and accusations may emerge. It is far too little recognized that those problems at the relational level are often more burdening than the typical deficiencies due to dementia. Unfortunately, it is still considered that a clarification and diagnosis are only worthwhile for diseases which are curable. However, the aim of every evidence-based medicine should be giving every patient and his relatives the best possible quality of life, including symptomatic treatment options and prevention of possible complications. A frank opening discussion of the diagnosis paves the way for the patient and his relatives to deal with the situation and to develop together a solution strategy in the challenging setting of dementia, which always affects the whole familial and social system. The patient is entitled to be informed about his/her diagnosis, including dementia. The diagnostic disclosure requires time and highest professionalism, the knowledge of the individual deficiencies and resources, the social situation, the biography and the personality of the patients but also of their relatives. The diagnostic disclosure arouses a lot of emotions, that need to be addressed and also be absorbed. Primarily, the conversation should be conducted with the patient, but preferably in the presence of the relatives. A very important point is the appreciation of the dementia patient, even with anosognosia. The relatives should not be given just general advice, there should rather be a therapeutic conversation responding to their sensation of permanent loss of the beloved person, their grief and anger. Only this way a solid fundament can be established for mutually finding a cooperative strategy in terms of a behavior-oriented systematic therapy. Therefore, the support of a patient with dementia and his relatives not only involves case management and expert advice, even though they are of great importance too, but also the commitment to the changed relationship and situation. After that, resilience might be developed, which is crucial to cope with this long-lasting disease, which is always associated with a step-by-step farewell.