Since January 1, a new care law has been in force for the approximately 1.3 million people receiving care in Germany, which primarily strengthens their autonomy: people receiving care should receive the best possible support in making independent decisions about their own lives. Psychologist Prof. Dr. Julia Haberstroh has been researching what such support - also known as decision-making assistance - can look like in practice and under what conditions it can be successful for over ten years. She is currently leading the "DECIDE" research project at the University of Siegen, which is investigating the extent to which people with Alzheimer's dementia find it easier to make self-determined decisions in the familiar surroundings of their own home. The project is one of the few systematized studies on the topic of "decision assistance" worldwide. It is funded by the Federal Ministry of Education and Research (BMBF) with over 1 million euros.
People with Alzheimer's dementia suffer from short-term memory impairment, while old memories are retained for a long time. According to Prof. Haberstroh's hypothesis, their own home and the memories associated with it could therefore help them to better recall their personal values, beliefs and life themes. This is where she and her team want to start in order to enable people with Alzheimer's dementia to make self-determined decisions despite their illness. "In order to assess whether a certain decision is right for me, I need to be able to assess the consequences: What would that mean in concrete terms for me and my everyday life? We assume that this is easier for people with Alzheimer's dementia in their familiar surroundings - this is where their everyday life takes place," says Haberstroh. She and her colleagues assume that consultations in their own four walls reduce the complexity of the situation, as patients have to abstract much less in order to imagine the effects of a decision.
The influence of the environment
The team is using the decision to make advance health care planning - better known as a living will - as a concrete example for the study. "We want to use this very complex decision to test our hypothesis that the ability of people with Alzheimer's dementia to give consent can be better supported in a familiar environment," says Prof. Haberstroh. A positive side effect is that the project will help more patients to make valid advance health plans. This has often not been the case for people with Alzheimer's dementia in particular, reports Haberstroh: "Only just over half of all people over the age of 65 have a living will at all, and around half of existing living wills cannot be interpreted sufficiently and are therefore of questionable validity. This proportion is estimated to be even higher for people with Alzheimer's dementia."
In the memory outpatient clinics of the Siegen District Hospital and the University Hospital Frankfurt, the research team offers patients with incipient dementia the opportunity to plan their health together in advance. Corresponding structures have already been established at both locations. A total of 88 people with Alzheimer's dementia are to be recruited for the study, 44 each in Siegen and Frankfurt. As part of the study, medical specialists will speak to the patients twice during the process of drawing up a living will - once at home and once in hospital. In each case, the ability to give consent is assessed using a standardized survey instrument. "Which of the two appointments takes place at home and which at the clinic is determined at random. By comparing the respective results, we want to find out what influence the location has on the ability to give consent," explains Haberstroh.
If it turns out that the home has a positive effect as a decision-making location, this could also be transferred to other decisions - be it political elections, finances or deciding where to live. "My hope is that we can establish a new form of decision-making assistance that complements the measures already in place and gives people with Alzheimer's dementia more self-determination on various levels," says Prof. Haberstroh. The research project is highly topical and relevant, especially in light of the new guardianship law. "But DECIDE is also an important project for me personally, as it brings together numerous findings from my previous studies," says Haberstroh, praising in particular the enormous support from care practitioners in the region: "I am experiencing an impressive enthusiasm for research here, which is what makes such an elaborate experimental study like this possible in the first place. I would like to express my sincere thanks for this."
This text was first published as a news article by the University of Siegen:
Better judgment within your own four walls (Tobias Hoffmann)