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Exploring the Delivery and Management of Specialised Post-Diagnostic Care and Support in Young-Onset Dementia: A
Sophie van Westendorp1, Cynthia Hofman2, Merwin Mortier1
1Department of Primary and Community Care, Radboud University Medical Centre, Nijmegen, The Netherlands.
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.
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