SveDem, the Swedish Dementia Registry – A Tool for Improving the Quality of Diagnostics, Treatment and Care of Dementia Patients in Clinical Practice

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Abstract

Background

The Swedish Dementia Registry (SveDem) was developed with the aim to improve the quality of diagnostic work-up, treatment and care of patients with dementia disorders in Sweden.

Methods

SveDem is an internet based quality registry where several indicators can be followed over time. It includes information about the diagnostic work-up, medical treatment and community support ( www.svedem.se). The patients are diagnosed and followed-up yearly in specialist units, primary care centres or in nursing homes.

Results

The database was initiated in May 2007 and covers almost all of Sweden. There were 28 722 patients registered with a mean age of 79.3 years during 2007–2012. Each participating unit obtains continuous online statistics from its own registrations and they can be compared with regional and national data. A report from SveDem is published yearly to inform medical and care professionals as well as political and administrative decision-makers about the current quality of diagnostics, treatment and care of patients with dementia disorders in Sweden.

Conclusion

SveDem provides knowledge about current dementia care in Sweden and serves as a framework for ensuring the quality of diagnostics, treatment and care across the country. It also reflects changes in quality dementia care over time. Data from SveDem can be used to further develop the national guidelines for dementia and to generate new research hypotheses.

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Most cited references 37

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Trends in the incidence and prevalence of Alzheimer's disease, dementia, and cognitive impairment in the United States.

Walter A Rocca, Ronald Petersen, David S. Knopman … (2011)

Declines in heart disease and stroke mortality rates are conventionally attributed to reductions in cigarette smoking, recognition and treatment of hypertension and diabetes, effective medications to improve serum lipid levels and to reduce clot formation, and general lifestyle improvements. Recent evidence implicates these and other cerebrovascular factors in the development of a substantial proportion of dementia cases. Analyses were undertaken to determine whether corresponding declines in age-specific prevalence and incidence rates for dementia and cognitive impairment have occurred in recent years. Data spanning 1 or 2 decades were examined from community-based epidemiological studies in Minnesota, Illinois, and Indiana, and from the Health and Retirement Study, which is a national survey. Although some decline was observed in the Minnesota cohort, no statistically significant trends were apparent in the community studies. A significant reduction in cognitive impairment measured by neuropsychological testing was identified in the national survey. Cautious optimism appears justified. Copyright Â© 2011 The Alzheimer's Association. Published by Elsevier Inc. All rights reserved.

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Is dementia incidence declining?: Trends in dementia incidence since 1990 in the Rotterdam Study.

E Schrijvers, B F J Verhaaren, P. Koudstaal … (2012)

To investigate whether dementia incidence has changed over the last 2 decades. We compared dementia incidence in 2 independent subcohorts of persons aged 60-90 years from the Rotterdam Study, a population-based cohort study. The first subcohort started in 1990 (n = 5,727), the second in 2000 (n = 1,769). Participants were dementia-free at baseline and followed for at maximum 5 years. We calculated age-adjusted dementia incidence rates for the 2 subcohorts in total, in 10-year age strata, and for men and women separately. We also compared mortality rates, differences in prevalence of vascular risk factors, and medication use. Finally, we compared brain volumes and the extent of cerebral small vessel disease in participants who underwent brain imaging 5 years after the baseline examinations. In the 1990 subcohort (25,696 person-years), 286 persons developed dementia, and in the 2000 subcohort (8,384 person-years), 49 persons. Age-adjusted dementia incidence rates were consistently, yet nonsignificantly, lower in the 2000 subcohort in all strata, reaching borderline significance in the overall analysis (incidence rate ratio 0.75, 95% confidence interval [CI] 0.56-1.02). Mortality rates were also lower in the 2000 subcohort (rate ratio 0.63, 95% CI 0.52-0.77). The prevalence of hypertension and obesity significantly increased between 1990 and 2000. This was paralleled by a strong increase in use of antithrombotics and lipid-lowering drugs. Participants in 2005-2006 had larger total brain volumes (p < 0.001) and less cerebral small vessel disease (although nonsignificant in men) than participants in 1995-1996. Although the differences in dementia incidence were nonsignificant, our study suggests that dementia incidence has decreased between 1990 and 2005.

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Twenty-year changes in dementia occurrence suggest decreasing incidence in central Stockholm, Sweden.

Chengxuan Qiu, Eva von Strauss, Lars Bäckman … (2013)

To explore whether prevalence, survival, and incidence of dementia have changed from 1987-1994 to 2001-2008 in Stockholm, Sweden. This study is based on 2 cross-sectional surveys of people aged 75 years or over conducted in central Stockholm: the Kungsholmen Project (KP) (1987-1989, n = 1,700) and the Swedish National study on Aging and Care in Kungsholmen (SNAC-K) (2001-2004, n = 1,575). In both surveys we diagnosed dementia according to DSM-III-R criteria, following the identical diagnostic procedure. Death certificates were used to determine survival status of KP participants as of December 1994 and SNAC-K participants as of June 2008. We used logistic and Cox models to compare prevalence and survival, controlling for major confounders. We inferred incidence of dementia according to its relationship with prevalence and survival. At baseline, 225 subjects in KP and 298 in SNAC-K were diagnosed with dementia. The age- and sex-standardized prevalence of dementia was 17.5% (12.8% in men; 19.2% in women) in KP and 17.9% (10.8% in men; 20.5% in women) in SNAC-K. The adjusted odds ratio of dementia in SNAC-K vs KP was 1.17 (95% confidence interval 0.95-1.46). The multiadjusted hazard ratio of death in SNAC-K vs KP was 0.71 (0.57-0.88) in subjects with dementia, 0.68 (0.59-0.79) in those without dementia, and 0.66 (0.59-0.74) in all participants. Prevalence of dementia was stable from the late 1980s to the early 2000s in central Stockholm, Sweden, whereas survival of patients with dementia increased. These results suggest that incidence of dementia may have decreased during this period.

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Author and article information

Contributors

Terence J Quinn: Role: Academic Editor

Journal

Journal ID (nlm-ta): PLoS One

Journal ID (iso-abbrev): PLoS ONE

Journal ID (publisher-id): plos

Journal ID (pmc): plosone

Title: PLoS ONE

Publisher: Public Library of Science (San Francisco, CA USA )

ISSN (Electronic): 1932-6203

Publication date (Electronic): 19 February 2015

Publication date Collection: 2015

Volume: 10

Issue: 2

Electronic Location Identifier: e0116538

Affiliations

[1 ]Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Center for Alzheimer Research, Division for Neurogeriatrics, Huddinge, Sweden

[2 ]Geriatric Clinic, Karolinska University Hospital, Stockholm, Sweden

[3 ]Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Center for Alzheimer Research, Division of Clinical Geriatrics, Stockholm, Sweden

[4 ]Trädgårdstorgets Primary Care Unit, Linköping, Sweden

[5 ]Municipality of Norrtälje, Norrtälje, Sweden

[6 ]Central hospital, Karlstad, Sweden

[7 ]Department of Public Health and Caring Sciences/Geriatrics, Uppsala University, Uppsala, Sweden

[8 ]Neuropsychiatric clinic, Sahlgrenska University Hospital, Gothenburg, Sweden

[9 ]Clinical Memory Research Unit, Department of Clinical Sciences Malmö, Lund University, Malmö, Sweden

[10 ]Department of Community Medicine and Rehabilitation, Geriatric Medicine, Umeå University, Umeå, Sweden

[11 ]Sahlgrenska Academy, Institute of Health and Care Sciences at Gothenburg University, Gothenburg, Sweden

[12 ]Centre for Research & Development, Uppsala University/County Council of Gävleborg, Gävle, Sweden

University of Glasgow, UNITED KINGDOM

Author notes

Competing Interests: The authors have declared that no competing interests exist.

Conceived and designed the experiments: DR SMF PC AKE NG AH KK BF LK UBM KN PN HW AW BW ME. Performed the experiments: DR SMF PC AW BW ME. Analyzed the data: DR SMF PC AKE SGP NG AH KK BF LK UBM KN PN HW AW BW ME. Contributed reagents/materials/analysis tools: DR SMF PC AKE NG AH KK BF LK UBM KN PN HW AW BW ME. Wrote the paper: DR SMF PC AKE SGP NG AH KK BF LK UBM KN PN HW AW BW ME.

* E-mail: Dorota.Religa@ 123456ki.se

Article

Publisher ID: PONE-D-14-31107

DOI: 10.1371/journal.pone.0116538

PMC ID: 4335024

PubMed ID: 25695768

SO-VID: 4daec8ed-8af5-454a-88bf-c84f2abd1096

License:

This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited

History

Date received : 17 July 2014

Date accepted : 9 December 2014

Page count

Figures: 3, Tables: 3, Pages: 14

Funding

SveDem register is supported by the Swedish Association of Local Authorities and Regions and the Swedish Brain Power network. Financial support of Svenska Läkaresällskapet, Alzheimerfonden and Swedish Research Council (Drn 2012-2291) for Dorota Religa is acknowledged. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Custom metadata

Data Availability All relevant data are within the paper and its Supporting Information files.

SveDem, the Swedish Dementia Registry – A Tool for Improving the Quality of Diagnostics, Treatment and Care of Dementia Patients in Clinical Practice

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Abstract

Background

Methods

Results

Conclusion

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PLOS Climate

Most cited references 37

Trends in the incidence and prevalence of Alzheimer's disease, dementia, and cognitive impairment in the United States.

Is dementia incidence declining?: Trends in dementia incidence since 1990 in the Rotterdam Study.

Twenty-year changes in dementia occurrence suggest decreasing incidence in central Stockholm, Sweden.

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Contributors

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Author notes

Article

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Funding

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