Dementia care needs better structure

02.02.2010 15:25

News from the IDA project

Dementia must be accepted as one of the biggest health policy challenges in Germany and those affected by it must be provided with more structured care and support. This is one of the central conclusions from a multi-year health care research study by the Dementia Care in General Practice (IDA) initiative, which was presented together with the results at a press conference in Berlin.

The IDA project partners AOK-Bundesverband, AOK Bayern as well as the research-based pharmaceutical companies Eisai and Pfizer appeal to German health policy: There is a need to set the course so that both the medical and nursing care of dementia patients and the support of their caring relatives are better structured and in view of the demographic change can also be ensured in the future. Health services research such as the IDA study must be intensified and adequately funded.

The results of these can show how general medical and specialist treatment and nursing care, supplemented by voluntary commitment, reach people with dementia and their caring relatives in a targeted and efficient manner. In addition, alternative care options should be examined. This is the only way to identify existing deficits and remedy them sustainably.

At the same time, the findings from healthcare research and model projects should be translated into healthcare reality in a coordinated manner. In order to make access and use easier, it is essential, given the variety of different service offerings, to make them clearer and more transparent, to coordinate them and to interlink them sensibly.

Finally, the incentive structures for the actors from the medical profession, nursing, voluntary work and self-help who ensure the care of people with dementia should be further developed in order to enable their commitment in a targeted and sustainable manner. Family structures are changing The approach required by the IDA project partners to better structure dementia care , is based in particular on the knowledge that family support for dementia patients will be less and less possible in the future due to demographic changes. Life expectancy is increasing, the proportion of the younger population is shrinking, and traditional family structures are changing profoundly.

Dementia is one of the most expensive diseases due to the high and long-term care required and will therefore place a considerable financial burden on the social security systems in Germany in the future. This becomes particularly clear against the background of the costs that are already incurred today: The IDA project evaluated the care effort of the participating relatives with the average labor costs of an outpatient care service or a household help.

It became clear that home care for people with dementia would be difficult to finance without caring relatives: including family support, the annual cost per patient is 47,000 euros. Around 80 percent of this comes from the contribution made by caring relatives. Statutory health and social care insurance costs an average of 10,000 euros annually for a dementia patient living at home.

IDA study points the way

The results of the IDA study can be groundbreaking for structured dementia care, which many European neighboring countries such as France and England have already initiated as part of national plans: The practical experience in implementation has confirmed that the family doctor Care for dementia patients and their caring relatives plays a key role. He coordinates the collaboration with specialists and involves the nursing department and therapists in the care. The IDA advisors (advice relatives) have successfully and effectively integrated elements of case and care management into their work.

In addition, it has proven to be right to use individual advisors who contact those affected proactively and at regular intervals. Early diagnosis and therapy in accordance with the guidelines are just as fundamental to the care structure as a geriatric orientation due to the multimorbidity of dementia patients. 

Qualified in-depth advice required

By actively arranging counseling for relatives via the family doctor and a subsequent form of contact between IDA advisors and relatives, the IDA project was able to successfully increase their utilization rate in patients with mild to moderate dementia: Compared to the control group (standard treatment, 17 percent) a quadrupling of personal contacts with the IDA advisor (on average 67 percent) was achieved in the two intervention groups (arranging the counseling). The study has not yet been able to demonstrate any statistically significant differences in effect as to whether additional advice and support can ensure that patients stay at home longer in contrast to normal care.

So far, there have been only small and no significant differences overall in terms of the course of the patients' illness and the burden on the caring relatives. However, since many patients may only move to a nursing home at a later date due to their early stage of dementia, the IDA project plans to conduct an additional evaluation of the results on the home transfer rate after a further two years. The advice provided in the IDA project was received very positively by the participants who took advantage of this offer.

Almost 80 percent of the relatives who took advantage of the support offer rated the offer as positive, and 50 percent said it helped “a lot”. It is now up to politicians to take on the challenge of dementia, to incorporate current findings into future structural models and to create the framework conditions so that important research questions can be answered promptly.