[Access to and Transitions within the Medical Care Process of Persons with Down Syndrome and Dementia: A Qualitative...

Compared to the general population, individuals with Down syndrome carry a much higher genetic risk of developing early onset Alzheimer's dementia. This leads to unique challenges and the need for a targeted patient journey.In a qualitative interview study with medical professionals, patient organisations and formal and informal care persons, we assessed barriers within the medical care process of this patient group as well as current approaches to overcome these problems. The study is one module of a multi-method project founded by the Innovation Fund of the German Joint Commission. The results presented here focus on access to and transitions within the medical care process. 14 guided interviews were conducted by a team of moderators by video conference, recorded and transcribed. The analysis of the results was carried out as a qualitative content analysis based on the methods of Mayring.Given the varying degree of premorbid intellectual disability, difficulties recognizing dementia symptoms were reported leading to delays in initiating the diagnostic process. Limited knowledge of the special disease risk and symptom manifestation in routine medical care as well as the lack of specialized medical institutions were identified as additional hurdles. Insufficient dissemination of information about existing specialised institutions to regular physicians and caregivers was criticized. All stakeholder groups drew attention to limitations in access to occupational and speech therapy because of the inadequate number of specialized therapists. Improvements suggested by the interview partners focussed on topics such as the implementation of guidance of the patient journey to and within the medical care process by one institution, easily accessible information for patients and caregivers as well as optimised training for physicians in routine care.Barriers such as insufficient availability of specialised service providers and information deficits about the specific disease risks and symptoms of the population have also been identified in international literatur; in addition, management and coordination deficits in the fragmented German health care system represent well known additional barriers. Approaches to improve the situation can be seen, on the one hand, in improved information and training offers for caregivers and service providers, and, on the other hand, in the expansion of the range of specialized service providers, in particular the Medical Centres for Adults with Disabilities. Informed by these study results and the results of other project modules, health policy recommendations for the improvement of the patient journey of patients with Down syndrome and dementia will be developed in the last project module.