Identifying unmet needs for coordinated person-centred dementia care: An innovative approach from observation to implementation

Research Problem and QuestionsDementia presents a significant challenge to healthcare systems.

The complex nature of the condition requires individuals and their caregivers to engage with multiple healthcare sectors, necessitating coordinated, person-centred care across various providers. However, several barriers impede the effective delivery of holistic care.

As a result, the urgent need for coordinated, person-centred care for individuals with dementia remains largely unmet.This project aims to address these challenges by focusing on the intersections and collaboration across systems, ultimately providing practical recommendations to support coordinated and person-centred care for people with dementia.

The specific questions we aim to address are: 1) To what extent does care fragmentation occur among people with dementia? 2) What are the volume and trajectory of care transitions among patients with dementia? 3) What are the unmet needs and potential solutions for coordinated, person-centred dementia care?Data and MethodsThis project will adopt an innovative approach from observation to implementation, by leveraging data from the Swedish National Study on Aging and Care in Nordanstig (SNAC-N, n=766), the Screening Across the Lifespan Twin Study (SALT, n=44,919), and the National Swedish Register for Cognitive/Dementia Disorders (SveDem, n=129,387).

Additionally, we will conduct qualitative studies further to understand dementia care and the well-being of caregivers.Societal Relevance and UtilisationDementia care in Sweden has faced criticism for structural deficiencies, such as fragmentation and poor coordination. There is limited knowledge about how different care providers coordinate in practice.

This project aims to enhance our understanding of how collaboration in dementia care occurs and how it is experienced by various care providers.

A comprehensive investigation of these issues is essential for optimizing the dementia care process and establishing an effective model for care collaboration.Plan for Project RealisationThe project is grounded in well-established cohort studies and an extensive dementia registry that encompasses both specialist and primary care at national and regional levels.

These are complemented by qualitative studies involving patients with dementia and their caregivers.

Through the collaborative efforts of a multidisciplinary team, this project offers a unique opportunity to address significant knowledge gaps in dementia care.