Patient Management Pathways in Dementia – resource utilisation, diagnosis and drug treatment in the Stockholm Region, Sweden - 11/03/25

Doi : 10.1016/j.tjpad.2025.100132 
Emil Aho 1, , Dorota Religa 2, Mozhu Ding 3, Bengt Winblad 1, 4, Linus Jönsson 1, #, Karin Modig 3, #
1 Division of Neurogeriatrics, Department of Neurobiology, Care Sciences and Society, The Center for Alzheimer Research Karolinska Institutet, Stockholm, Sweden 
2 Division of Clinical geriatrics, Department of Neurobiology, Care Sciences and Society, The Center for Alzheimer Research Karolinska Institutet, Stockholm Sweden 
3 Unit of Epidemiology, Institute of Environmental Medicine, Karolinska Institutet, Stockholm, Sweden 
4 Theme Inflammation and Aging, Karolinska Univ Hospital, Huddinge, Sweden 

Corresponding author: Emil Aho, Karolinska Institutet, BioClinicum J9:20, Akademiska stråket 171 64 Solna, SwedenKarolinska InstitutetBioClinicum J9:20, Akademiska stråket 171 64SolnaSweden

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Abstract

Background

New diagnostic and therapeutic options for Alzheimer's disease are beginning to be introduced and expected igto become more widely available in the coming years. Improved understanding of current pathways in diagnosis and initial care of patients with dementia can help inform choices around how best to integrate new technologies in existing care structures.

Objectives

The aim of this study is to describe the care management pathways defined by the involvement of specialist and primary care for individuals with newly diagnosed dementia. It also seeks to characterise individuals in different management pathways based on resource use prior to diagnosis, the type of dementia diagnosis received, and the proportion who receive symptomatic anti-dementia drug treatment.

Design

Observational cohort study

Setting

Stockholm region, Sweden.

Participants

All newly diagnosed dementia cases between 1st January 2018 to 30th June 2020 (n=9,781). Dementia diagnoses in primary care were based on Regional Stockholm health care database and diagnoses in specialist care were based on the National Patient Register in Sweden.

Measurements

Care management pathways were categorized into three groups: primary care only (diagnosed and followed up in primary care), specialist, no follow-up (diagnosed in specialist care but not followed up in specialist care), and specialist with follow-up (diagnosed and followed up in specialist care). These classifications were based on patients’ care episodes from the date of diagnosis and the subsequent 18 months. age at diagnosis, resource utilisation one-year prior diagnosis and diagnosis given and symptomatic anti-dementia treatment 18 months after initial diagnosis.

Results

A total of 9,781 newly diagnosed dementia cases were identified. In the 18 months following diagnosis, 63% of patients were diagnosed either partly or fully in specialist care, while 37% were diagnosed solely in primary care. Patients diagnosed and managed only in primary care were older, spent more days in hospital, and received more social care in the year preceding their diagnosis. Their total care costs were also the highest. Alzheimer's disease was the most common diagnosis (48%), while 27% had an unspecified dementia diagnosis, varying by care setting (61% for patients managed in primary care only and 6% for patients diagnosed and followed up in specialist care). Overall, 47% of patients received symptomatic anti-dementia treatment, with the highest share for patients diagnosed and followed up in specialist care (73%) and the lowest in primary care only (19%). Diagnosis varied by age and care setting Alzheimer's was most common in settings involving specialist care, whereas unspecified dementia was more common in primary care only regardless of age.

Conclusion

The findings that patients managed exclusively in primary care were older, had higher pre-diagnosis resource utilisation, and were less likely to receive specific diagnoses or anti-dementia treatments highlight the crucial role of primary care in diagnosing and managing dementia among older individuals with complex needs. Further research is needed to explore primary care's role in diagnosis and treatment across diverse healthcare systems.

Future research is needed to explore whether and how new diagnostic tools and treatment for AD could facilitate timely diagnosis and care for older individuals with dementia in primary care.

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Keywords : Dementia, Delivery of health care, Primary health care, Care management pathways, Anti-dementia drug treatment


Plan


 Author's contributions: EA conceptualised and designed the study with support from LJ and KM. EA analysed the data and prepared the draft manuscript. KM attained the data and ethical permissions. LJ and KM have contributed equally and therefore take joint last authorship. All authors reviewed the results, gave input on text in different version of the manuscript, contributed to, and approved the final version of the manuscript.


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