A seamless model for post-diagnostic care

At Alzheimer’s Society we are urging Government to set more ambitious diagnosis targets for dementia, but what happens following a diagnosis?

A diagnosis is vital: it opens up opportunities for care, for support, and treatments.

Yet support at the point of, and following a diagnosis, is often fractured, difficult to access and varies in quality.

Having worked for 25 years in the NHS there were many new challenges to face when I crossed sectors to join Alzheimer’s Society in 2019. From having to regularly speak in the media to getting to understand charity law and governance, there was much to learn. One area I hadn't appreciated was the significant role of large trusts and philanthropists and how pivotal they were to support the change we all want to see in dementia.

Going to the Peter Sowerby Foundation with a proposal to improve post-diagnostic support for people living with dementia was my first ever funding pitch- a daunting experience!

It was a gem of an idea and it’s thanks in particular to Tom Brown, Colin Capper and Zeenath Hussain that we were able to secure a fantastic ￡2million to bring this ambitious programme to reality.

Driving positive change

What drives me is being able to take the best of research and turn it into positive change for people living with dementia through changes in policy and practice.

The partnership with the Foundation has enabled the development, testing and implementation of a model called Primary care-led post-diagnostic Dementia Care (PriDem).

PriDem shows what is possible when funders help to create that connection between research, policy and practice - enabling the brightest minds to come together and develop bold ideas to create lasting change for people living with dementia.

A solution for post-diagnostic care

PriDem is led by the fantastic Professor Dame Louise Robinson and her national team who have developed an evidence-based model, which shows what good post-diagnostic care should look like. It featured in the 2022 World Alzheimer Report as a case study of good practice dementia care and has helped to shape discussions and guide practice amongst a global audience.

It can be used at scale in primary care settings and has been proven to make a real difference to the care of people with dementia following a diagnosis.

How they did it

Post-diagnosis support models in the UK and across the globe were analysed by the researchers, behind PriDem which enabled them to identify 20 ‘core components’ which six of the best practice models had in common. For example, ensuring families had a named lead professional and joined up care right from diagnosis to end of life.

Their research found that a primary care-led approach in which a specialist healthcare professional (eg. a dementia nurse) based at a GP surgery coordinates post-diagnostic dementia care, resulted in more personalised, timely and cost-effective care. They also provided much needed dementia training and support for the GP staff who lacked confidence in providing dementia care.

The model is similar to that used for the management of other diseases such as diabetes, cancer and Parkinson’s disease, where there is a single point of contact in primary care who liaises with key services.

Under PriDem, holistic care plans were devised, which set out a plan not just for medications but also for daily living. A pilot scheme was held with two Clinical Dementia Leads (CDL) working with seven GP practices and 4 Primary Care Networks in the Northeast and Southeast. Both CDLs were senior nurses with over ten years’ experience in frailty and dementia.

What were the impacts?

1. The Clinical Dementia Lead delivered 45 training sessions with almost 600 healthcare staff to increase their awareness of dementia, their confidence, and ultimately, improve the care they provide.
2. Local and national dementia services were mapped out to support GP practice staff in making appropriate, timely referrals and therefore ensure greater access to a range of support.
3. Personalised care plans increased from 37.4% to 64.7% - suggesting a move towards more holistic planning and a better quality of life.

For example, beforehand only 2% of plans addressed the activities and interests of the person with dementia whereas post-intervention 40% of care plans covered this. Pre-intervention, just 5% of care plans indicated the person had been given the opportunity to discuss their diagnosis in terms of asking questions and having it explained but post-intervention this was in 23% of care plans.

Importantly, people fed back that they wanted these plans.

Recommendations

The funding from the Peter Sowerby Foundation informed our From Diagnosis to End of Life report and Left to Cope Alone policy reports. Both reports have been well received by commissioners and the recommendations from them have been presented, and then integrated, into local dementia strategies, including local authorities in Northumberland, Durham, Gloucestershire, and Doncaster.

Both reports have been, and will continue to be, key pieces of work informing both our approach and the approach of our peers and professionals.

What’s next?

The model is feasible and works for both the patients and the GP teams caring for them. It has the potential to create long-lasting improvements to dementia care and support, including improving the consistency and quality of annual dementia reviews.

Now, the Foundation is supporting the next phase - driving awareness of the importance of post diagnostic support for people with dementia and further scaling up the PriDem model.

Through our own support services at Alzheimer’s Society we have been proactively working to build enduring partnerships that will enable implementation of the PriDem model, or its core components. Norfolk and Suffolk have been identified as key sites for piloting services informed by PriDem. By pump-priming funding into local areas, we hope to spur growth and build the infrastructure needed for sustained post diagnostic support.

A transformative story

PriDem is a story of what can happen when charitable organisations, philanthropists, researchers, policy advisors and front-line teams come together, underpinned by strong leadership such as that exemplified by Louise Robinson.

We would never have reached this point without the generous support of the Peter Sowerby Foundation. They said ‘yes’ to our vision at Alzheimer’s Society, standing side by side with us to end the devastation caused by dementia. This sowed the seeds for the creation of this fantastic model of post-diagnostic support as well as the routes through policy and practice to scale it up across the country.