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What is dementia?

Dementia is not a single disease; it is a general term used to describe the deterioration of cognitive functioning. Symptoms of dementias can vary in severity and progress through multiple stages. They include difficulties with thinking, problem-solving, remembering and making decisions, to the extent that daily activities can become challenging. Some people with dementia may also find it hard to control their emotions and aspects of their personality may change.

There are multiple types of dementia and symptoms may differ depending on the type.

Alzheimer’s disease is the most common type of dementia and is thought to be caused by the build-up of two types of proteins, tau and amyloid, in and around brain cells. Both proteins damage and disrupt neurons; specialised cells that transmit messages between different parts of the brain.

How is dementia currently treated?

Currently, there is no cure for dementia. There are medicines and treatments that can help manage, or temporarily reduce, some of the symptoms. These, however, do not treat the cause of the underlying disease. This means that they do not stop, or slow, its progression.

What are the new treatments?

Drugs that slow, or stop, the progression of dementia (sometimes referred to as ‘disease-modifying’ treatments) have not, at the time of writing, been approved for use in the UK. There are, however, some new disease-modifying treatments in development. Notably, two drugs, lecanemab and donanemab, are scheduled to be appraised by the National Institute for Health and Care Excellence (NICE) in 2024.

Both drugs are aimed at those with mild cognitive impairment, or mild dementia, due to Alzheimer’s disease. The drugs, known as immunotherapies, aim to slow the progression of the disease by helping the immune system to recognise, target and try to break down amyloid plaques.

When might new treatments be available on the NHS?

Licencing new treatments

Before a medicine can be sold in a country, and administered in people, it must receive a ‘marketing authorisation’. In the UK, marketing authorisations are issued by the Medicines and Healthcare products Regulatory Agency (MHRA). To date, only the manufacturers of lecanemab have announced that they have submitted a marketing authorisation to the MHRA for their drug as treatment for early Alzheimer’s disease.

NICE technology appraisal

If a drug receives a marketing authorisation from the MHRA it would also need to be recommended for use by NICE before it could become available to patients via the NHS in England. NICE’s appraisals are a type of cost/benefit analysis that is based on a review of clinical and economic evidence. NICE has stated that it is scheduled to appraise both lecanemab and donanemab NICE in 2024.

Preparing for new treatments

Diagnosing dementia and Alzheimer’s disease

The ‘national ambition’ for the dementia diagnosis rate is for at least two-thirds of people with dementia to have a formal diagnosis. In November 2023, the diagnosis rate was 64.7%. This means around one in three people with dementia do not have a diagnosis. There are currently no national standards for waiting times for dementia assessments.

The new treatments are designed to treat Alzheimer’s disease specifically and, for the new treatments to be effective, it is important to identify the disease as early as possible. Diagnosing subtypes of dementia requires more advanced and invasive procedures, but Alzheimer’s Research UK estimates that only 2% of people can currently access these tests. Stakeholders say existing diagnostic capacity in the NHS will need to increase significantly and there needs to be investment in new diagnosis methods (PDF), such as blood tests that pick up biomarkers for dementia.

NHS England has established a ‘national programme team’ to prepare for the potential roll out of new treatments for Alzheimer’s disease. Its work includes addressing the need for “significant additional diagnostic capacity”.

Delivering new treatments

Donanemab and lecanemab are delivered by intravenous drip. Stakeholders are concerned about having sufficient staffing, skills and resources to administer and monitor new treatments.

Alzheimer’s Research UK has called for the rollout of a UK-wide network of ‘brain health clinics’, which would work alongside existing dementia services and a ‘cross-speciality Alzheimer’s Disease Clinical Pathway Council’ to develop a new pathway for diagnosing and treating dementia.

NHS England has said it recognises additional staffing capacity and further training will be needed to deliver new treatments.

Approval and funding

For use in the NHS, new treatments need to be approved by NICE based on clinical and cost-effectiveness. Alzheimer’s Research UK says it is concerned that the treatments might not be determined by NICE to be affordable for the NHS compared to the current spend on dementia. It wants NICE to consider the wider context of the cost of informal care for dementia when they review the economic evidence for its approval. The charity is also concerned that it will take time to build up evidence of the long-term clinical benefits of the treatments.

The charity also wants the NHS and drug companies to consider managed access arrangements, which aim to give patients quicker access to promising new treatments whilst addressing any concerns about clinical or cost effectiveness. There are two dedicated NHS England funding sources for treatments in managed access, each with an annual budget of £340 million: the Cancer Drugs Fund and the Innovative Medicines Fund.

Dementia policy and funding commitments

In January 2023, the Government announced it will publish a Major Conditions Strategy that will cover six conditions including dementia.

In August 2023, the Department of Health and Social Care published Major conditions strategy: case for change and our strategic framework. It commits to recovering the ‘national ambition’ for dementia diagnosis rates, investigating variation in rates across the country and doubling funding for dementia research by 2024/25, as initially pledged in the 2019 Conservative Manifesto. It also says NHS England will map medicines for Alzheimer’s disease. A national programme team for early Alzheimer’s treatments was established in summer 2023.

In December 2023, the Government said it remains committed to increasing funding for dementia research to £160 million per year by 2024/25 and has spent over £413 million on dementia research from 2017/18 to 2021/22.

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