Helping where it's needed: The Dementia Care Managers

The DZNE trains specialists to help care for people with dementia. Thanks to their experience and strong networks, the quality of life can be significantly improved - for patients as well as for their relatives.

Someone has to keep an overview when a patient develops dementia: someone who coordinates treatment with primary care physicians and specialists, who informs the nursing staff and knows which documents are necessary for insurance companies and which aids make everyday life easier. Being a networker, coordinator and, above all, helper - that is the role of Dementia Care Managers, who are being trained at the DZNE.

It all started with a study in Mecklenburg-Western Pomerania, which also received a lot of international attention: In DelpHi-MV, the researchers wanted to find out how patient care can be improved. The experiences and suggestions of physicians, nurses, pharmacists, patients and relatives were incorporated. Over a period of years, they developed and tested the concept of Dementia Care Management, which is intended to reduce the burden on all those involved - and make the lives of those in need of care and their relatives more worth living.

This study has resulted in a concrete training program in which Dementia Care Managers are trained. This highly complex training program comprises more than 600 hours of theory and practice and has since produced the first care professionals certified as Dementia Care Managers.

Insights into practice

The focus is on the coordination of physicians and nursing staff. In practice, there are often difficulties in exchanging information, even though everyone involved is actually pulling in the same direction. It is therefore important to consolidate communication and facilitate coordination.

But the researchers also found out that there is much to be done in the non-medical sector. Legal advice in the field of social law, for example, plays a major role for the relatives. Furthermore, there are many questions about how everyday life can be organized and how the patients' enjoyment of life can be maintained. These questions are often at the bottom of the list, because clarifying the urgent medical need often leaves no room for all the other aspects.

The most important facts at a glance

  • Many helpers are involved in the care of dementia patients, from doctors to caregivers to relatives.
  • Dementia Care Managers are tasked with coordinating all those involved to improve care and enhance quality of life.
  • The concept of Dementia Care Managers has been developed by scientists at the DZNE site Rostock/Greifswald.

Targeted help from specialists

This is precisely where the Dementia Care Managers come in. In the initial period, they visit their patients at least once a week to get to know their living situation better and to build up a relationship of trust. They establish contact with the attending physicians and care services. And they usually come across problems that no one has noticed before: that someone has problems with incontinence at night, for example, or has difficulty hearing or seeing. That the steps in front of the front door have become too high and a ramp would actually be necessary.

The Dementia Care Managers tackle these problems directly. They are linked to a whole network of support services: they put people in touch with the care advice service at the health insurance fund, organize specialists for sanitary needs or even contact persons at local relatives' groups, where children or spouses of dementia patients exchange information. In this way, very concrete offers of help can be organized quickly and unbureaucratically, directly simplifying the lives of everyone involved.

The interim results give cause for hope

Researchers have now been able to demonstrate how helpful Dementia Care Management actually is. They accompanied patients over a period of one year - those who were cared for by specialists as well as a control group that was cared for according to the usual standards. The result: in the group in which the Dementia Care Managers were active, fewer psychiatric problems occurred, fewer ani-dementive treatments were necessary and the relatives reported that they were noticeably relieved. The quality of life of patients and relatives increased significantly.

With this positive interim result in mind, the course is currently being set for offering the training nationwide in the future: The first pilot course, to be held in 2022 with a recognized training provider, has been completed and is currently being evaluated. If this evaluation is positive, it is hoped that many more people will soon be able to benefit from more comprehensive care and offers tailored specifically to them.

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