Swedish registry for cognitive/dementia disorders, 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. Uppsala Clinical Research Center is responsible for the development of the database online and its support.   

SveDem organization

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). 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.

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 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.

Feedback

Each participating unit obtains continuous descriptive statistics (updated every day) 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.

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. 94 644  patients are now registered and the registry have 92 602 baseline registrations and 85 762  follow-up registrations. (2020-08-07)

100% of all memory clinics in Sweden are currently participating in SveDem.

 

Contact us:

National coordinator

Karin Westling

Phone: +468585 897 83

Mobilphone: +46700 85 66 78

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Chair

Maria Eriksdotter

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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

Ulla-Britt Mattsson, MD, Neuropsychiatric clinic, Sahlgrenska University Hospital, Gothenburg

Katarina Nägga, MD, Neuropsychiatric clinic, Skåne University Hospital, Malmö

Anne Sjöblom, RN, Activity Developer, Västmanland County, Västerås

Helle Wijk, RN, prof, Sahlgrenska Academy, Sahlgrenska Univerisity Hospital, Gothenburg

Sibylle Mayer, MD, Geriatric clinic, Gävle Hospital

Hugo Löwheim, MD, Assoc prof, Norrland University Hospital, Umeå

Anna Segernäs Kvitting, 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

 

Call in:

Karin Westling, national coordinator, Karolinska University Hospital Stockholm