Epidemiology consortium

Neurodegenerative dementias are characterized by a steadily increasing reduction in memory and other cognitive and practical skills. The most common of these dementias are Alzheimer’s disease and frontotemporal dementia. There is currently no treatment available that heals the patient permanently from these diseases. However, temporary improvement and a slowing down of disease progress can be achieved. For those suffering from these diseases and their families, for practitioners and carers and for the society at large it is necessary:

• to diagnose dementias and which disease is causing them and then to treat them specifically.
• to predict the course of the disease and make early plans for prevention, treatment and nursing care.
• to optimize the formal and informal systems for carers and healthcare.
• to establish and predict costs issuing from dementia on an individual basis and for the society.

The consortium for “Epidemiology, early detection, primary care and costs of care of degenerative dementia” is dedicated to meeting these clinical and epidemiological challenges.

Background: The ailments and adverse effects of neurodegenerative dementias develop in a very gradual way. The first signs are problems with memory; in later stages the sufferer loses his or her ability to lead an independent life and will require nursing care; a number of years can lie between these two stages. The natural course of the disease is variable per individual; two people may have an identical diagnosis (e.g. Alzheimer’s disease) yet have discernable differences in the speed of degeneration. While it is true that it is not currently possible to treat the cause of neurodegenerative dementias nor prevent them, nevertheless disease progression may be delayed by an early, targeted implementation of individual, family and social resources and protective factors and also by the targeted employment of existing treatments. The sufferer’s quality of life can thus be temporarily retained – and with this retain the quality of life the family taking care of him or her. This will not only reduce subjective suffering but also reduce costs. However, in order to achieve this use of resources some important epidemiological and clinical questions still need to be answered, and this in light of the reality of primary care: the overwhelming majority of patients will be receive their medical care from GPs and the highest costs will be incurred from nursing care.

In detail, the consortium works to elucidate the following open themes:

• Early recognition of the development of dementias, in particular of Alzheimer’s disease.
• The identification of risk factors and protective factors in light of the prodromal symptoms for memory loss and dementia.
• The prediction of the rate of deterioration in daily living skills and of the need for nursing care for people suffering from dementia or cognitive impairment..
• The development of blood-based and genetically predictive biomarkers for the early diagnosis and prediction of dementia and the neurodegenerative diseases causing it.
• A mapping out of the variation in the natural course of dementias between individuals in terms of resources, protective factors, support and treatment.
• A mapping out of the needs of the individual for care and support in terms of medical care and nursing care, taking into consideration common secondary disorders and behavior problems (“challenging behavior”).
• A determination of the quality of life and costs per patient on an individual basis, taking into considering the disease stage, and then a determination of how quality of life and costs may be optimized.
• An optimization of methods GPs can use for diagnosing dementias.

Achieving the above aims requires prospective, longterm cohort studies using large samples of persons initially not suffering from dementia. Open themes pertaining to health costs and nursing care needs can be elucidated using case data from health insurance companies. These two different sources of data can be used in parallel to answer individual open questions. In order to achieve the greatest possible synergy, each sub-project is allocated according to its data source (cohort or health insurance company). The Epidemiology Consortium has three main branches:

1. The prospective AgeCoDe cohort composed of elderly persons not (initially) suffering from dementia.
2. Project 1: “Early detection, naturalistic course and economic burden to dementia in primary care – prolongation and extension trial” in the AgeCoDe cohort; and
3. Project 2: “Utilization and costs of medical and nursing services for patients with AD under the German Statutory Health Insurance System – a prospective observational study” based on health insurance company data