Person-centered care at population scale: The Swedish registry for behavioral and psychological symptoms of dementia

IF 4.9 Q1 CLINICAL NEUROLOGY

Alzheimer''s and Dementia: Translational Research and Clinical Interventions Pub Date : 2025-02-24 DOI:10.1002/trc2.70057

Linus Jönsson, Moa Wibom, Elisabet Londos, Katarina Nägga

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Abstract

INTRODUCTION

Behavioral and psychological symptoms of dementia (BPSD) are a common driver of suffering and high care needs. We describe the Swedish BPSD registry, founded in 2010 to develop an evidence base for quality improvement in the care of patients with BPSD. Further, we illustrate the potential of the registry by evaluating how individual BPSD affects mortality.

METHODS

The registry provides a framework for documenting the occurrence of BPSD, formulating individual care plans, and following up outcomes. Symptoms are recorded by the nursing home version of the neuropsychiatric inventory (NPI), and data are entered by trained staff, mainly at institutional care facilities.

RESULTS

Enrollment in the registry totaled 114,869 patients with dementia and a mean age of 84 years. Patients were followed until death (median overall survival 2.2 years) or loss to follow-up (median time under observation 4.2 years in patients remaining alive). Common symptoms included agitation/aggression, aberrant motor behavior, and irritability. Mortality increased with NPI severity and use of neuroleptics but decreased in patients receiving cholinesterase inhibitors or memantine.

DISCUSSION

The scale, completeness, and duration of the registry, together with the possibility of linking to other data sources, offer great potential for data-driven research.

Highlights

The Swedish BPSD Registry, founded in 2010, has followed over 114,000 patients collecting data on symptoms, care plans, interventions and outcomes.
The registry provides a framework for providing and evaluating person-centered care for patients with BPSD, and represents an unparalleled data source for research into BPSD and its management.
Mortality increased in patients with more severe BPSD symptoms and for those treated with neuroleptics, but decreased in patients receiving cholinesterase inhibitors or mematine.

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来源期刊

Alzheimer''s and Dementia: Translational Research and Clinical Interventions Medicine-Psychiatry and Mental Health

CiteScore

10.10

自引率

2.10%

发文量

134

审稿时长

10 weeks

期刊介绍： Alzheimer''s & Dementia: Translational Research & Clinical Interventions (TRCI) is a peer-reviewed, open access,journal from the Alzheimer''s Association®. The journal seeks to bridge the full scope of explorations between basic research on drug discovery and clinical studies, validating putative therapies for aging-related chronic brain conditions that affect cognition, motor functions, and other behavioral or clinical symptoms associated with all forms dementia and Alzheimer''s disease. The journal will publish findings from diverse domains of research and disciplines to accelerate the conversion of abstract facts into practical knowledge: specifically, to translate what is learned at the bench into bedside applications. The journal seeks to publish articles that go beyond a singular emphasis on either basic drug discovery research or clinical research. Rather, an important theme of articles will be the linkages between and among the various discrete steps in the complex continuum of therapy development. For rapid communication among a multidisciplinary research audience involving the range of therapeutic interventions, TRCI will consider only original contributions that include feature length research articles, systematic reviews, meta-analyses, brief reports, narrative reviews, commentaries, letters, perspectives, and research news that would advance wide range of interventions to ameliorate symptoms or alter the progression of chronic neurocognitive disorders such as dementia and Alzheimer''s disease. The journal will publish on topics related to medicine, geriatrics, neuroscience, neurophysiology, neurology, psychiatry, clinical psychology, bioinformatics, pharmaco-genetics, regulatory issues, health economics, pharmacoeconomics, and public health policy as these apply to preclinical and clinical research on therapeutics.