The Charitable Face of Dementia
We speak with the Alzheimer’s Society in the UK about their work
| 4 min read | Interview
The Alzheimer’s Society is a collective of carers, experts, campaigners, researchers, clinicians, and people with dementia who all share the same goal: to create a world where dementia no longer devastates lives. Right now, they are working through a “help and hope” five-year framework (running to 2027), which aims to reach more people, ensure faster and more accurate diagnoses, and make dementia the priority it should be by finding new ways to support people living with one of the conditions.
We speak with Regional Fundraiser for Cheshire Jess Mackenzie to learn more.
Why is dementia such a motivating field to work in?
Estimates suggest that over 900,000 people in the UK live with dementia – and a further one in three people born in the UK today will develop dementia in their lifetime. The ubiquity of the disease is motivation in itself, but I also have a personal reason for working for Alzheimer’s Society. A few years ago, my uncle passed away as a result of Alzheimer’s disease. I am truly passionate about limiting the number of people who lose a loved one living with dementia.
After all these years, why are there still so few treatments?
As of 2023/2024, The Alzheimer’s Society invested £15.8 million into dementia research. This involves funding various research projects and initiatives we believe can improve care and diagnoses, understand causes, and work towards a functional treatment. However, the demands of treating dementia are well documented. Even though we know more about the diseases that cause dementia than ever before, we still don’t understand exactly how these different diseases affect brain cells.
On a positive note, we are going in the right direction; one of the many drugs we have funded – donepezil – has helped improve daily symptoms for people living with the condition. Thanks to the DOMINO-AD trial (which we supported), we now know that donepezil is not only potent for people with mild to moderate Alzheimer’s disease, but also continues to be useful in the more advanced and severe stages.
What are the major challenges facing the Alzheimer’s field right now?
Dementia research, for many decades, has been chronically underfunded. In 2016, the research funding spent in the UK on all types of neurodegenerative diseases, including dementia, was £130 million; the research funding spent on cancer in the same year was over four times larger. Though we would never want to take cancer researchers away from their vital work, we’d like to replicate the transformative successes they’ve seen in treating cancer in the last few decades.
If we are to follow this success, we’ll need to focus on one group: early career researchers (ECRs). These are researchers who have only recently begun their work and are either still working on their PhDs or are within a few years of doing so. They face a variety of challenges – from stiff competition for limited funding to the financial uncertainty of the short-term jobs that are typically the only type of work available to them. As a result, many ECRs leave the field of dementia research, often moving out of research altogether, taking with them a wealth of knowledge and skills. We want to help ECRs stay in dementia research and do their best work so that their ideas, intelligence, and insight can make a real difference.
Are there any success stories you would like to highlight?
The society played a key role in helping reduce the prescribing of antipsychotic medicines. By the mid-2000s, around 25 percent of those living with dementia in the UK were being prescribed these drugs to control symptoms, such as aggression and agitation, in advanced dementia patients. However, there was growing concern that these drugs were doing harm and shortening the lives of people with dementia. We funded researchers to find alternative ways using patient-centered care to help manage these symptoms without the need for antipsychotics.
What emerging directions of Alzheimer’s research do you find particularly promising?
Lecanemab is currently undergoing regulatory review in the UK and could become the first disease-modifying treatment for Alzheimer’s disease in the country. The drug helps remove amyloid from the brain. It was Alzheimer’s Society funded research led by Professor Sir John Hardy that discovered the importance of amyloid protein in the development of Alzheimer’s disease. This research laid the foundations for billions of pounds of investment into many drugs like lecanemab.
How can pharma companies and researchers support the Alzheimer’s Society mission?
We have a scheme – the “Accelerator Programme” – that is designed to support people in developing and accelerating their product and service innovations for people living with dementia. Beyond this, I would ask those in the pharma industry to stay up to date with the research taking place, and, if they think they can support in any way, get in touch: [email protected]!
