New study to determine the care preferences of people with dementia
09.07.2021 11:16
In addition to the renowned Alzheimer's Research Prize, the Frankfurt Hans and Ilse Breuer Foundation has been awarding up to three doctoral scholarships annually since 2006 in order to promote young scientists in dementia research. Wiebke Mohr received one of these doctoral scholarships in 2021 from the German Center for Neurodegenerative Diseases (DZNE) eV, AG Translational Health Services Research.
There is currently no curative treatment for dementia. There is hope that the Alzheimer's drug aducanumab, which was recently approved in the USA, will slow the progression of this form of dementia. Nevertheless, people with dementia (PwD) depend on person-centered care and nursing in order to maintain a high quality of life in their own home for as long as possible. The German Center for Neurodegenerative Diseases (DZNE) is conducting a new study.
The project was funded by the Hans and Ilse Breuer Foundation for three years PreDemCare aims to determine the care preferences of PwD. “Early patient involvement is particularly important in order to strengthen the self-responsibility, self-determination and autonomy of those affected,” says Wiebke Mohr, project coordinator, foundation scholarship holder and doctoral student at the DZNE.
However, for PwD, active participation in medical, nursing and care-related decisions can be a major challenge. The cognitive impairments mean that complex decision-making processes, taking into account several decision criteria, are only possible to a limited extent. However, for the legally anchored and socially desired participation of those affected, it is necessary to know the needs, wishes and preferences of people with disabilities and to take these into account in everyday care decisions. There are already internationally recognized procedures for determining preferences. These offer the possibility, by breaking down a complex decision into several simplified selection decisions, to support and involve people with disabilities in decisions that affect their own health and care better than before in the future.
The DZNE at the Rostock/Greifswald location already has experience with participatory methods. Through interviews and advisory board meetings, important, real-life insights have been introduced into the projects and into the content and technical development of digital support offerings.
Project process
The PreDemCare-Study uses a study design to develop a measuring instrument to record patient preferences, which includes different and mutually complementary scientific methods (so-called “mixed methods design”). The study initially provides for individual interviews with people with disabilities and their relatives as part of a preliminary study and as part of an initial test of the measuring instrument. The final questionnaire to determine preferences will then be developed based on the results of the preliminary study.
Patient participation in the preliminary study is intended to ensure that the content of the final questionnaire is correct from the perspective of those affected. The questionnaire should ultimately be carried out with MwD and treating physicians in order to examine the correspondence of the care preferences of patients and physicians. The preferences are determined using the scientific method of “Analytic Hierarchy Process (AHP)” determined - a method that divides complex decisions into hierarchies consisting of properties and characteristics of the subject of the decision. The AHP is an instrument of the so-called “Multi-criteria decision making (MCDA)”, which has already been used many times in international research to determine patient preferences. In comparison to other preference measurement methods, the AHP method is particularly suitable for people with cognitive impairments, as the determination of patient preferences only ever takes into account two individual components of a complex decision.
In addition, in the PreDemCare-Study also examined where there might be different assessments of care preferences between doctors and patients by presenting the AHP questionnaire to treating physicians. The aim of this is to examine the communication between PwD and treating doctors in more detail.