Let’s make pre-diagnosis support better
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DCAN is working with NHS England and others to improve pre-diagnosis support. Since Covid19 there has been a reduction in the numbers of people being diagnosed. People are also waiting longer. Though things are improving, we want to understand what people need and what support is available.

By Ian McCreath, Policy Manager, Alzheimer’s Society and DCAN Operating Officer.

One of the more noticeable impacts of COVID-19 on dementia support, has been how it has affected people getting a diagnosis. Rates of diagnosis fell sharply in the first wave and although these did pick up, they remain below 2018 levels. People are also facing longer waiting times between sharing concerns with a GP and receiving a diagnosis.

Speeding up waiting times is a priority and there have been a number of innovations brought in to try to achieve this whilst preserving the quality of diagnosis. This includes the introduction of digital consultations and assessments which appear to be working well for some people. We should expect longer delays to be with us for some time to come- so what else can be done to improve the experience of people during pre-diagnosis? Our project intends to find out.

We are starting with understanding what is most important to the people experiencing pre-diagnosis support for themselves,  a partner, family member or friend. Through virtual focus groups, telephone or zoom interviews and online surveys we aim to get as clear a view as possible of the emotional, practical, social as well as the clinical needs of people pre-diagnosis.

A briefing will be produced on what we have learned via these conversations and shared widely in January.

At the same time our project will be talking to as broad a range of professionals and organisations as possible, who have experience and offers of support available to people pre-diagnosis. These include dementia specific support available from Dementia Advisers, Admiral Nurses and from Memory Assessment Services and others, as well as other sources of support such as Social Prescribing Link Workers, social services and a range of voluntary, community, and social enterprises.

We want to understand what support is available, how well it meets the needs we’ve heard from people awaiting a diagnosis, and how the support can be accessed.

The task will then be to explore ways to ensure as many people can access and benefit from existing sources of support. This may be through awareness raising and access to information and it may also be through identifying new collaboration and partnership opportunities.  Our project will help with both by bringing people, roles and organisations together to co-design project resources and tools that together can help turn waiting times into practical and positive preparation times.

We anticipate our conversations and thinking will also reveal gaps and spaces for new innovation and development to flourish. We are therefore holding open the possibility for a second phase of the project that can look at further change and improvement beyond improving knowledge and access to existing support.

Everything depends upon the learning from people awaiting a diagnosis. If you have experience of dementia diagnosis since April 2020 or if you, a family or friend is currently waiting for a diagnosis please do complete it. Your experience will count and will help us make things better.

Our survey can be accessed here.

If you are a professional in a position to share details of the project and the opportunity to complete the survey please do. Everything we learn will be openly available so that everyone can begin to apply the learning into their role and work. The more engagement we get, the better the experience can be for all of us.

To stay updated on this and our other projects and activity why not become a member? Sign up to DCAN here.

This project forms part of our DCAN Right at the Start Enquiry. Learn more here.

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