Swedish Dementia Registry, SveDem
The Swedish Dementia Registry, SveDem, is a national quality registry on dementia disorders. SveDem is financed by the Swedish Association of Local Authorities and Regions and the Swedish Brain Power network. Uppsala Clinical Research Center is responsible for the development of the database online and its support.
The aim of the registry is to improve quality of diagnostics, treatment and care of patients with dementia disorders.
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). To achieve a dementia care of similar and high quality in the whole country, the national quality registry for patients with dementia disorders, SveDem, was initiated.
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 yearly. 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 webbased registry.
Each participating unit obtains continuous descriptive statistics from its own registrations online and can compare them with regional and national data. A report from SveDem is published yearly for the profession, political and administrative decision-makers.
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. 47 323 patients are now registered and 30 924 followed-up. (2014-12-19)
98% of all memory clinics in Sweden are currently participating in SveDem.
Phone: +468585 897 83
Mobilphone: +4670484 64 54
Maria Eriksdotter, prof, MD, Geriatric clinic. Karolinska University Hospital, Huddinge and Karolinska Institutet, chair.
Kerstin Kåwe, occupational therapist, Karlstad hospital
Lena Kilander, MD, Assoc prof, Dept of Geriatrics, Uppsala University Hospital, Uppsala
Ulla-Britt Mattsson, MD, Neuropsychiatric clinic, Sahlgrenska University Hospital, Gothenburg
Peter Nordstöm, prof, MD, Geriatric clinic, Norrland Univeristy Hospital, Umeå
Katarina Nägga, MD, Neuropsychiatric clinic, Skåne University Hospital, Malmö
Mariann Strömberg, MAS Vadstena och Ödeshögs kommun
Helle Wijk, RN, Assoc prof, Sahlgrenska Academy, Sahlgrenska Univerisity Hospital, Gothenburg
Anders Wimo, MD, prof, Bergsjö Primary care center, Nordanstig and Karolinska Institutet
Bengt Winblad, prof, Alzheimer Disease Research Center, Karolinska Institutet
Ann-Katrin Edlund, RN/national coordinator, Karolinska University Hospital Huddinge