RCPsych Wales Briefing - Increasing early, effective dementia diagnosis in Wales

The context in Wales

The National Action Plan for Dementia sets a vision for Wales to be a dementia-friendly nation that recognises the rights of people with dementia to feel valued and to live as independently as possible in their communities.

A central component of the plan is:

The right to an early and accurate diagnosis of dementia, and to receive evidence-based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.

In delivering upon this, a key aspiration for the National Plan is to increase the number of people formally diagnosed with dementia by 3% annually and to improve early diagnosis and timely interventions.

Here are the figures, In Wales we already know:

• Alzheimer’s Disease (AD) affected 46,800 people in Wales in 2019, with numbers projected to increase to 55,700 by 2025 and 79,700 by 2040.
• 1 in 14 people above 65 years are affected by AD and 2/3rd's are women who are the major care givers.
  

Brain health and early effective diagnosis of dementia

In September, we hosted our national dementia conference bringing together clinicians from across multi-disciplinary teams. In opening the conference, Dr Mani Krishnan set the scene.

Dr Krishnan highlighted key messages, that ‘One specialty and one service can’t do it alone’, and that increasing effective, early diagnosis of dementia requires a multidisciplinary, multi-specialty collaboration in diagnostic and treatment pathways.

Furthermore, Having this approach in place requires several prerequisites:

• having the right tools and equity of access wherever you are
• embracing technology and innovation, and
• engaging more people into research.

In this briefing, we’ve outlined several actions taken by the Royal College of Psychiatrists in Wales, often in partnership with stakeholders and with the support of Welsh Government. We've sought to take action to ensure these prerequisites are in place.

A national approach for FDG-PET scanning to aid diagnosis of dementia

FDG-PET is a highly useful imaging modality for the diagnosis of uncertain or difficult to diagnose primary neurodegenerative disorders.

Patterns of altered cerebral glucose metabolism seen at FDG-PET are useful as imaging biomarkers to assist in making the clinical diagnosis of neurodegenerative diseases causing dementia.

In September, we issued our case study of the utility of FDG-PET scanning to aid dementia diagnosis. The case study detailed a pilot project that was established by ABUHB in late 2019. The project aimed to benefit patients in the Gwent area; increasing earlier diagnosis and diagnostic rates for dementia, achieving more reliable diagnosis of dementia subtype, enabling earlier disease-specific treatment and access to psychosocial support and reduction of carer burden.

The project was also developed with a view to scaling to a national offer should it generate positive outcomes. Following the pilot project the Welsh Health Specialised Services Committee has commissioned FDG-PET scans for dementia nationally. Further details of the evaluation and guidelines are available within the case study detail.

Subsequently, ABUHB have committed to a number of actions in continuing work into developing and enhancing the infrastructure for early and effective diagnosis of dementia. This includes:

• continuing to provide access to access to Amyloid PET scans in ABUHB for patients with suspected dementia where the diagnosis is uncertain
• piloting a CSF analysis pathway to aid diagnosis of dementia in ABUHB.

The successful pilot project from Aneurin Bevan University Health Board's (ABUHB) Older Adult Mental Health, and Radiology Directorate; was developed with support from Wales Research and Diagnostic Positron Emission Tomography Imaging Centre (PETIC) and the Royal College of Psychiatrists Wales.

Are we ready to deliver disease-modifying treatments?

The medication development pipeline for Alzheimer’s disease, the most common cause of dementia, is increasingly focused on delivering treatments that can modify the progression of the disease. It is likely that these treatments will have the greatest benefits for people with Alzheimer’s disease when implemented in the early stages before symptoms have reached the threshold of clinical dementia. Given that the first life-changing treatment may shortly be available, this puts a significant onus on being able to diagnose Alzheimer’s disease at the earlier stages.

Old Age psychiatrists need better access to diagnostic tools and training in order to take advantage of breakthroughs in dementia treatments.

We recently issued a joint report with Alzheimer’s Research UK Are we ready to deliver disease-modifying treatments? (PDF). We found that specialists are keen to embrace the arrival of new dementia drug treatments, but need much more support in order to effectively implement them into their clinical practices. 

The joint research highlights significant gaps in support that old age psychiatrists need to effectively diagnose people with Alzheimer’s Disease before dementia and deliver future treatments to those living with the condition.  

Over 500 old age psychiatrists contributed to the report which shows that services are not ready to deliver disease-modifying treatments for Alzheimer's disease, the most common cause of dementia:

• 36% of psychiatrists thought their services could adapt to deliver disease-modifying treatments within a year
• 6% of psychiatry services are able to fully meet the NICE guidelines regarding accessing further biomarker and diagnostic tests for Alzheimer’s disease. 

Dr Mani Krishnan, chair of the Old Age Psychiatry Faculty, said: 

“Early accurate diagnosis plays a vital role in the treatment of Dementia. It’s important that Psychiatrists are given access to the diagnostic tools and the training to help reduce the progression of this debilitating illness by way of diagnosing Alzheimer’s disease even before developing dementia." 

Within the report, we make three recommendations:

1. The NHS should dedicate specific funding to increase diagnostic infrastructure and improve equity of access.
2. A commitment across the clinical community
3. The NHS should work with key organisations to commission a clinical pathway that would meet the needs of patients to access a disease-modifying treatment. This would need the commitment to ensure the:

• Development of a cross-speciality approach to support multidisciplinary working led by the NHS and in conjunction with clinical stakeholders.
• Development of new clinical pathways, to support the equitable delivery of new treatments led by the NHS and in conjunction with clinical stakeholders.
• Delivery of ongoing training and professional development to support the changes in clinical practice required to deliver disease-modifying treatments – including the use of emerging biomarkers, treatment delivery and safety monitoring.

Conclusion

It's clear that not ‘One specialty and one service can do it alone’, and that in increasing effective, early diagnosis of dementia - we do require a multidisciplinary, multi-specialty collaboration in diagnostic and treatment pathways.

We've seen examples where this works, FDG-PET scanning is a great example. The speed and scale that those pilot projects can be brought into the service should give us optimism for not only meeting targets but in ensuring the most effective and timely diagnosis.

Throughout this, we must always ensure, we have:

• The right tools and equity of access wherever anyone is in Wales,
• That we embrace technology and innovation, and that
• We engage more people into research.

We must also work to support treatments that can work to modify the progression of the disease. This is a further area that offers significant opportunity in Wales.

Following this briefing, we will be writing to Welsh Government to detail recommendations on the next steps.