Lecanemab (Leqembi) access to treatment explained

The licensing of Lecanemab (Leqembi) on the 22nd of August 2024 caused excitement and hope for many. That same day, the National Institute of Health and Care Excellence (NICE) advised the NHS against prescribing the drug due to heavy financial and resource costs compared to small clinical benefits. Understandably, this caused anger and upset. Before that, on 26th July 2024, the European Medicines Agency (EMA) did not approve the licensing of Lecanemab because they felt that the risks outweighed the benefits.

It is important to know the facts behind NICE decision and to recognise that this is a key milestone. For the first time, we have a drug that can slow the progression of Alzheimer’s disease worthy of licensing in the UK.

Lenanemab has strict inclusion criteria, licensed only for those with early or no symptoms of Alzheimer’s disease. The necessary resources for ongoing maintenance and treatment are costly and limited in availability. Even those capable of purchasing the drug, may not meet the strict inclusion criteria.

The Alzheimer’s Society reports that there are currently 125 drugs in experimental trials for Alzheimer’s disease, several of which are focused on treating later stages of the disease. In addition, some of the trials are exploring are less stressful and less resource-intensive ways to maintain treatment. While disappointing, this is a major milestone and demonstrates how close we are to a treatment that delays the progression of Alzheimer’s disease and is far more accessible and manageable for more people.

Follow the link below to view my YouTube video explaining the outcomes of the CLARITY AD trial for Lecanemab, that influenced the decisions made by regulatory bodies

A review on suicidality experienced by people living with dementia

Prompted by my review of memory assessment services across a region in the UK, this systematic review and meta-analysis concerning prevalence and risk factors for people living with dementia highlights the need for skilled and comprehensive risk assessments.

The study highlights that younger people with dementia and men are most at risk. Despite a diagnosis of dementia people can maintain a good quality of life, and maintain identity, purpose and meaning.

I have helped many people achieve this following a diagnosis of dementia. Some people decided to travel, others changed careers or employers made adaptations at work so they could sustain their roles for longer. The most heartfelt changes were those who decided they would focus their time on their families and the people they loved.

Hot Questions

Is there a difference between Alzheimer's disease and dementia?

Alzheimer’s disease is a progressive brain disease that eventually leads to dementia. Many diseases can cause dementia but Alzheimer’s disease is the most common cause making up around 60 to 70% of all causes of dementia.

Dementia is a syndrome, which means it is a collection of symptoms that when presenting together make up dementia. These symptoms include memory and attention difficulties, problems with social behaviour, planning and sequencing tasks, and poor judgement i.e. putting winter clothes on a hot day. Visuospatial difficulties include depth perception and distance distortion. Difficulties perceiving objects or faces. Difficulties understanding and producing language.

Dementia, the syndrome, is a product of later-stage brain disease. Diseases include Alzheimer’s disease, Vascular dementia, Dementia with Lewy Bodies, Parkinson’s disease dementia, and rarer dementias including Frontotemporal Dementia, Creutzfeld Jacob, Progressive Supra Nuclear Palsy and more.

What is Dementia

In celebration of World Alzheimer's Month, 2024, I provide an understanding of dementia and the diseases that cause it. I aim to reduce some of the stigma and myths around these diseases and the syndrome that is dementia.

Sometimes the terms dementia and Alzheimer's disease are viewed as separate conditions. The relationship between the two can be confusing. In this video, I explain what Alzheimer's disease and dementia are. I also introduce some of the rarer dementias such as frontotemporal dementia (FTD) including Primary Progressive Aphasia (PPA), and a rare form of Alzheimer's disease called Posterior Cortical Atrophy (PCA).

If you or your loved one is struggling with the symptoms of dementia, or trying to come to terms with the disease, please follow this link

An Introduction to Dementia in Young People

On 17th October 2024, I was honoured to talk to the Bessie Makatini Foundation of South Africa about Young Onset Dementia (YOD). YOD refers to people whose cognitive difficulties/symptoms emerged before age 65.

The amazing audience ranged from people at home in South Africa, supporting loved ones with dementia to healthcare professionals in the UK.

We explored -

• The semantics of Young Onset Dementia.

• The global incidence and prevalence of YOD.

• An introduction to the rarer dementias that more frequently affect younger people.

• The diagnostic challenges faced by younger people experiencing cognitive symptoms.

• The unique needs of People with YOD compared to those with late-onset dementia and chronic mental illness.

• The variability in support for people with YOD across the UK.

Thank you so much Bessie Makatini for your consistent compassion and hard work in improving the lives of people living with dementia and their families in South Africa.

To see more of the great work of the Bessie Makatini Foundation go to Bessie Makatini Foundation – Supporting people living with dementia

To view my presentation on Young Onset Dementia -