[Alzheimer's dementia in people with Down syndrome : Results of guideline-assisted expert interviews on healthcare deficits in the diagnostics and treatment as well as solution approaches].

Abstract

Background: People with Down syndrome have a genetically increased risk of developing early onset Alzheimer's dementia. An interview study with healthcare providers, patient representatives and employees in residential and work facilities was conducted to identify deficits in the healthcare process and approaches to overcoming them.

Method: In this study 14 semi-structured interviews were conducted and analyzed using qualitative content analysis.

Results: A lack of knowledge and experience on the part of medical service providers in dealing with and providing medical care for people with Down syndrome was identified as a key challenge. In addition, the diagnosis of dementia in people with Down syndrome is difficult for various reasons (including lack of appropriate diagnostic tools in standard care and lack of time or financial resources). Doubts were expressed about the efficacy of antidementia medications and the reasons for the increased use of sedatives were discussed. Attentive observation of behavior and involvement of caregivers, regular review and reduction of polypharmacy and the use of alternative behavior modification techniques were mentioned as possible solutions.

Conclusion: The identified deficits in the medical care of the target population and the approaches to solving them will be incorporated into the development of health policy recommendations in order to optimize the care situation of those affected in the long term.