SURR 0196 Dementia Care Coordinators

Dementia Care Coordinators: A Bridge in Dementia Care

Key Findings

The Problem

Key Implications

People with dementia are struggling to get their care needs met. This is because of increases in diagnosis rates and a care system under strain.

DCCs play a vital role

Support the workforce

Meet the needs of service users

DCCs need support and resources to keep working

Enable wider system working

DCCs can only work well if...

The DCC service is a much-needed bridge, capable of connecting people to services throughout their dementia journey, even when the care system is under strain.

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This research was funded by the National Institute for Health and Care Research (Applied Research Collaboration Kent, Surrey, Sussex). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

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Key Implication 2

Meet the needs of service users:

Create specific pathways for those with advanced dementia or living alone; and enable those with early onset dementia to co-design services.

Key Implication 3

Enable wider system working:

Use data linking to demonstrate the impact of DCCs; boost local service provision to match referral demand; and ensure outcomes capture the value of ongoing support, not just diagnosis rates.

Key Implication 1

Support the workforce:

Recruit person-centred, capable and diverse candidates; provide ongoing training; build a DCC community for peer-to-peer learning; protect their time for the things that matter; and promote the role of the DCC across the whole system to increase visibility.

Key Finding 1

DCCs play a vital role. They:

1. provide both proactive and responsive care and prioritisation;
2. signpost to community support and help to join up care across the system;
3. have difficult conversations about dementia diagnosis and symptom management;
4. deescalate potential crises.

Key Finding 2

DCCs need support and resources to keep working:

Their caseloads are rising, but their support, capacity and the wider system they refer into are not expanding to meet the need.

The Problem

People with dementia are struggling to get their care needs met. This is because of increases in diagnosis rates and a care system under strain.

New care roles have been developed to help, such as the Dementia Care Coordinator (DCC). DCCs connect people living with dementia and their families to health and care services for support. However, no evidence exists yet to show if these roles work, who they work for and in what circumstances. Researchers from the University of Surrey set out to investigate how the Dementia Care Coordinator Service works in Kent and Medway. Between 2022-2024, they conducted two surveys and interviewed 57 participants including: dementia care coordinators; service managers; healthcare professionals; people living with dementia; and family carers.

Key Finding 3

DCCs can only work well if:

the wider health and care system understand their scope of practice (both their abilities and limits).

Key Implication 3

Enable wider system working:

Use data linking to demonstrate the impact of DCCs; boost local service provision to match referral demand; and ensure outcomes capture the value of ongoing support, not just diagnosis rates.