Evidence map›Paper›PMID 41200695›Full record

ArticleHealth services insights2025

Exploring the Delivery and Management of Specialised Post-Diagnostic Care and Support in Young-Onset Dementia: A Cross-Sectional Study.

Sophie van Westendorp, Cynthia Hofman, Merwin Mortier, Britt Appelhof, Paula Gerring, Raymond Koopmans, Christian Bakker

Abstract read
In one paragraph

Article in Health services insights, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors.

Sophie van WestendorpDepartment of Primary and Community Care, Radboud University Medical Centre, Nijmegen, The Netherlands.ORCID https://orcid.org/0009-0003-7772-1463
Cynthia HofmanVilans, National Centre of Expertise for Long-Term Care, Utrecht, The Netherlands.
Merwin MortierDepartment of Primary and Community Care, Radboud University Medical Centre, Nijmegen, The Netherlands.
Britt AppelhofDepartment of Primary and Community Care, Radboud University Medical Centre, Nijmegen, The Netherlands.
Paula GerringVilans, National Centre of Expertise for Long-Term Care, Utrecht, The Netherlands.
Raymond KoopmansDepartment of Primary and Community Care, Radboud University Medical Centre, Nijmegen, The Netherlands.
Christian BakkerDepartment of Primary and Community Care, Radboud University Medical Centre, Nijmegen, The Netherlands.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Introduction: The need for tailored services for individuals with young-onset dementia (YOD) is well established. Specialised services exist but regional disparities may hinder timely and appropriate care and support. Yet, a comprehensive overview of such services is currently lacking. Objective: To examine regional disparities in the delivery, access and management of YOD-specialised services in the Netherlands, revealing service gaps and opportunities for future development. Design: An exploratory cross-sectional survey (YOD self-scan) was developed and distributed to 39 Dutch healthcare organisations affiliated with a national YOD knowledge infrastructure, ensuring broad geographical representation. Methods: Quantitative and qualitative data were collected through open- and closed-ended questions between July and August 2023. Descriptive statistics and manifest content analyses were used to assess the delivery and management of YOD-specialised services in terms of utilisation, capacity, accessibility, variety and organisational factors. Results: A total of 1707 individuals with YOD utilised outpatient services, and 801 received permanent residential care. Service delivery and management varied across regions. Rural organisations reported shorter waiting times, more employees who had received specific YOD training, and higher day care utilisation per organisation. Urban organisations offered a broader range of services and more involvement of local governments. Most organisations (72.4%) reported service gaps, including limited day care options, inflexible residential services, and insufficient support for carers, especially children of individuals with YOD. Also, the need for more innovative services and improved coordination was identified. Conclusions: YOD-specialised services are underutilised, likely due to unequal accessibility and regional disparities in the delivery and management of services. Addressing service gaps, expanding capacity, and enhancing knowledge exchange are important for equitable, high-quality care. These findings may inform future research and international efforts to improve equitable access and management of specialised dementia services.

Indexed as

access to post-diagnostic serviceshealthcare service managementhealth service deliveryregional disparitiesspecialised dementia careyoung-onset dementia (YOD)

Identifiers

PMID41200695
PMCPMC12586858

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.