SURR 0196 Dementia Care Coordinators

Dementia Care Coordinators: A Bridge in Dementia Care

Enable wider system working

Support the workforce

Meet the needs of service users

DCCs need support and resources to keep working

DCCs can only work well if...

DCCs play a vital role

Key Findings

The Problem

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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.

Key Implications

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.

Find out more about the research:

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.

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Meet the needs of service users:

Key Implication 2

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

Enable wider system working:

Key Implication 3

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.

Support the workforce:

Key Implication 1

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.

DCCs play a vital role. They:

Key Finding 1

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.

“It’s just managing your time […], I’ve got fifty tasks to do, but ten of them are really important, so I’m going to do those first.” (DCC12, interview)

"The son called up and said, I’m still not coping, the care agency isn’t helping, I just feel like I’m not getting this break, that I think a care home would be the best opportunity. I said, let’s speak to social services, let’s get a Kent Card in place, that mum could use her Attendance Allowance to pay the top-up fee […] within a week he noticed the change in his mum. He felt relieved […] he wasn’t stressed any more." (DCC12, interview)

“Every single client that I go to see, if they haven’t started the diagnosis process, I always do [...] try and encourage the people to do that.” (DCC17, interview)

"I had a call from a family where the daughter was in tears, you know, my mum's not sleeping, she's keeping my dad up all night, she hasn't slept for days. She's wrapping up knives and putting them in her purse, not because she wants to hurt anybody, but because she's so scared. […] So I went there that day and then did a rapid support referral, also contacted the GP […] so it was about getting some antibiotics very quickly, getting the support put in place, getting night sits put in place so the husband can sleep." (DCC41, interview)

DCCs need support and resources to keep working:

Key Finding 2

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

“Quite a few people are leaving. I’m keeping my eye out for a role. The trouble is, I absolutely love this role, I love the support I’m providing, and I really don’t want to leave, but it’s not sustainable, to be doing all these hours.” (DCC07, interview)

“Now, the problems with the dementia coordinators are mainly that there’s not been enough numbers around of people to take on the vast caseloads. And therefore, I think they’ve been overstretched.” (HCP03, interview)

“I did sort of get overwhelmed […] and I was feeling like I wasn’t being able to do my job properly, or I wasn’t doing it right […]. So, I would start crying myself and then, I would obviously go to my senior for support and help, and that’s because I just felt like I couldn’t cope with what people were wanting from me […], even though I knew deep down […] what I’m doing is helping them.” (DCC02, interview)

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.

The Problem

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.

DCCs can only work well if:

Key Finding 3

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

“[DCC] will pester you, which is what you need in this industry. It's not a negative, that's a positive, to make you do what you want to do.[...] I can honestly say they have been very inspirational and make me want to do stuff.” (HCP07, interview)

“I can take a very brief history of what's going on and say, 'right, [the DCC is] the best person,' rather than feeling I've got to have a long, drawn-out conversation to try and then find the best service myself.” (HCP11, interview)

Enable wider system working:

Key Implication 3

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.