Swedish registry for cognitive/dementia disorders, SveDem
The Swedish registry for cognitive/dementia disorders, SveDem, is a national quality registry on dementia disorders. SveDem is financed by the Swedish Association of Local Authorities and Regions. The development of the data base of SveDem and its support is managed by Uppsala Clinical Research Center.
Aim
The aim of the registry is to improve quality of diagnostics, treatment and care of patients with dementia disorders.
Background
The number of patients suffering from dementia is increasing, mainly due to the increased number of the elderly. In Sweden, 150000 individuals suffer from dementia and 2/3 of them have Alzheimer´s disease (AD). The national quality registry SveDem was initiated to achieve a dementia care of similar and high quality in the whole country for patients with dementia disorders.
Registration
SveDem started in May 2007. The aim is a registry with national coverage. Patients newly diagnosed with a dementia disorder are registered and followed-up annually. Age, gender, heredity, BMI, MMSE scores, diagnoses, dementia work-up investigations, medical treatment, support from community, time from referral to diagnosis are examples of parameters registered in the web based registry.
Feedback
Each participating unit obtains continuous descriptive statistics (updated every 24 hours) from its own registrations online and can compare them with regional and national data. A report from SveDem is published annually for the professionals, politicians and administrative decision-makers.
Conclusion
SveDem will give important and new knowledge about dementia care today, but also reflect changes in care. New knowledge of the more rare dementia disorders will be obtained. Time to institutional living will be one parameter that can reflect changes in care. Results from each unit can at all times be compared with regional and national data, which is an important tool for improving the quality of care at the local level.
The registry is continuously growing. 121 218 patients are now registered and the registry have 115 390 baseline registrations and 122 334 follow-up registrations. (2023-10-31)
100% of all memory clinics in Sweden are currently participating in SveDem.
More information:
Contact us:
National coordinator
Karin Westling
Phone: +468123 897 83
Mobile phone: +46700 85 66 78
Chair
Maria Eriksdotter
Steering comittee:
Maria Eriksdotter, MD, prof, Geriatric clinic, Karolinska University Hospital, Stockholm and Karolinska Institutet, chair.
Kerstin Kåwe, occupational therapist, Karlstad hospital
Lena Kilander, MD, prof, Dept of Geriatrics, Uppsala University Hospital, Uppsala
Katarina Nägga, MD, Senior physician/Assoc prof, Medical and Geriatric Clinic, University Hospital Linköping
Anne Sjöblom, RN, Activity Developer, Västmanland County, Västerås
Helle Wijk, RN, prof, Sahlgrenska Academy, Sahlgrenska University Hospital, Gothenburg
Sibylle Mayer, MD, Geriatric clinic, Gävle Hospital
Hugo Löwheim, MD, Assoc prof, Norrland University Hospital, Umeå
Anna Segernäs, MD, Primary Care Center, Linköping
Annika Nilsson, RN, Medically responsible nurse, The municipality of Kil
Dorota Religa, MD, prof, Geriatric clinic, Karolinska University Hospital, Stockholm and Karolinska Institutet
Helene Svensson, MD, Neuropsychiatric clinic, Sahlgrenska University Hospital, Gothenburg
Linus Jönsson, MD, prof, Karolinska Institutet, Stockholm
Co-opted member:
Karin Westling, national coordinator, Karolinska University Hospital Stockholm