Our dementia research impact

By making a critical research study possible over 15 years ago and campaigning for change, Alzheimer’s Society alongside others changed the way antipsychotic drugs are prescribed to people living with dementia - saving tens of thousands of lives and preventing families from going through untold heartbreak. 

Looking back at antipsychotic use

Families can face huge difficulties caring for a loved one in the later stages of dementia if they experience challenging dementia symptoms. These might include aggression, agitation, and hallucinations, all of which can be deeply distressing and sometimes a danger to the person living with dementia, their family, and paid carers.  

By the mid-2000s, prescription of powerful antipsychotics was commonplace for people living with dementia as a way of managing these symptoms, with a staggering 25% of people with a dementia diagnosis estimated to be on the drugs.  

Research demonstrated that the drugs caused serious side effects for some people, increasing the risk of stroke and death.

In 2009, it was estimated that this could lead to an additional 1,800 deaths of people living with dementia every year. The effectiveness of these drugs to manage symptoms was also called into question – less than 20% of those prescribed the drugs were thought to receive any benefit from them.

Looking for an alternative 

Alzheimer’s Society funded researchers set out to find an alternative way to manage challenging dementia symptoms and reduce use of antipsychotic drugs - by putting people living with dementia at the centre of their own care. 

Professor Clive Ballard, Professor Rob Howard and Dr Jane Fossey developed and led the pioneering ‘Focussed Intervention Training and Support (FITS)’ study which aimed to find alternative ways to manage challenging symptoms in care homes and reduce the use of antipsychotics. Their ground-breaking results – published in 2006 – showed it was possible to manage symptoms through a person-centred framework in care homes and reduce the prescription of antipsychotic drugs by a huge 40%.

These results proved that challenging symptoms could be managed without the need to rely on the powerful drugs. 

As they are today, Research Network Volunteers were at the heart of the study, staunchly sharing their own experiences to help researchers understand the real-world impact of their results.

Further support from Alzheimer’s Society made a large-scale study of the FITS intervention in care homes possible, leading to more research - all inspired by Ballard, Howard and Fossey’s original findings.  

Campaigning for change to save lives 

As a result of growing concern across the field about the use of antipsychotic medication, Alzheimer’s Society campaigners and supporters thrust the issue into public consciousness, raising the profile of the dangers of antipsychotic drugs.

Set against this backdrop, from 2006 -2011, the number of people living with dementia being prescribed antipsychotic drugs fell from 17% to 6.8%. 

Alongside other key players in the research community we took the fight all the way to government, and - after several years of campaigning – this ultimately led to the Department of Health publishing best practice guidelines in 2011, which aligned with our calls to reduce dangerous prescribing of the drugs.

The National Institute of Health and Care Excellence (NICE) followed suit, changing their guidelines to prioritise person-centred care as a key method to address challenging behaviours which can occur in dementia. They also provided information and resources aimed at reducing the prescriptions of antipsychotics.

In 2015, our campaigning took this work all the way to the top, with the Prime Minister's Challenge on dementia issuing a resounding call to continue to reduce dangerous prescribing of antipsychotics.  

By putting those with dementia at the heart of their own care – and treating them as people and not patients – the researchers and supporters who made it all possible have given families longer with their loved ones.  

Although Alzheimer’s disease was first identified in 1906, research to develop treatments was an enormous challenge because so little was understood about the fundamental causes of the disease.

This remained largely the case until our supporters enabled us to invest in research in the 1980s, which would change the course of dementia research history and is still influencing clinical trials today.  

The start of a new era

Beginning in 1987, Professor John Hardy’s research study, jointly funded by Alzheimer’s Society and the Medical Research Council, uncovered a new idea. Hardy wrote the first theory for how changes in the brain could lead to Alzheimer’s disease - named the ‘amyloid hypothesis’. 

Brave families who were living with an inherited form of dementia (familial Alzheimer’s disease) were recruited with the support of Alzheimer’s Society to take part in the study. At the time, amyloid was understood to be present in the brains of people with Alzheimer’s disease but its link to brain cell loss was still unknown. 

The study found these people had a mutation in the gene which contains the instructions for building amyloid protein, providing the first evidence that changes to the amyloid protein contributed to familial Alzheimer’s disease.

This discovery has defined a generation of research.

The information gathered in this study still contributes to research now – making this group of families and researchers pioneers. 

Galvanising the research community

The result of the study was so transformative it immediately galvanised the research community to build on the findings. It sparked global interest in dementia and a race to find treatments that target the cause of the diseases underlying it, rather than treating symptoms.

This interest offered hope to millions of people across the globe that Alzheimer’s disease could be stopped. 

Investment to lead clinical trials 

Incredibly, as a result of this research, the number of new clinical trials targeting Alzheimer’s disease increased rapidly from just 10 in 1999 to 120 a decade later –with 1,923 clinical trials having been started to date.

This represents a staggering total investment of around £450billion, an investment that has helped to build the foundations of our understanding and supported pioneering researchers to stay in the field.  

By investing in this work in 1987, Alzheimer’s Society’s supporters made their mark on dementia research for the decades that followed – and seeking out the research which could have the biggest impact for people affected by dementia remains a guiding principle of our work to this day.  

At least 70% of all people living in care homes are living with dementia. Deciding to move a loved one into residential care is one of the hardest decisions that families can make, and for the person living with dementia an unfamiliar environment with new routines and people can be distressing.

From a recent survey, 85% of people with dementia indicated that they wanted to remain living at home for as long as possible.

This means that support to help people with dementia manage day to day symptoms is essential.  

Donepezil is a dementia drug designed to improve the symptoms of Alzheimer’s disease. Although it does not slow down or stop its progression, donepezil makes symptoms like forgetfulness and anxiety more manageable, which means people can live well at home and stay independent for longer.  

Alzheimer’s Society and Donepezil 

Previously, donepezil was only prescribed to people living with mild to moderate Alzheimer’s disease. In 2012, Alzheimer’s Society invested £150,000 into a clinical trial called DOMINO-AD to investigate whether donepezil would continue to be effective as a symptomatic treatment for moderate to severe Alzheimer’s disease.

The trial’s lead investigator, Professor Rob Howard, believes that Alzheimer’s Society support and backing of the trial was essential in securing larger financial support from the Medical Research Council. Because of the trial’s positive findings, donepezil is now approved for the treatment of moderate to severe Alzheimer’s disease in the UK.  

The voice of people affected by dementia  

People affected by dementia worked alongside the research team and played a vital role in DOMINO-AD. Two members of the Society’s Research Network, Angela Clayton-Turner and Victoria Morgan brought vital experience of caring for loved one’s living with dementia into the heart of the trial’s development.

Angela and Victoria were instrumental in using their expertise to advise on many elements, including ways to recruit people living with dementia to the trial. They also shaped the information provided to potential trial participants, ensuring this was dementia friendly and accessible to all.  

Changing prescribing practice  

Before the DOMINO-AD trial, there was very little data for clinicians to refer to on whether to continue prescribing donepezil to people living with moderate to severe Alzheimer’s disease. This meant people further on in their dementia journey were often not prescribed the medication that could have helped to manage their symptoms.

However, in 2018, using data from the trial, the National Institute for Health and Care Excellence (NICE) guidelines recommended that clinicians should not stop prescribing donepezil because of the severity of a patient’s dementia – making it available to people at all stages of Alzheimer’s disease.   

Professor Rob Howard, chief investigator for DOMINO-AD said:

The results of DOMINO-AD changed [how we prescribe dementia drugs] practically overnight across the world, even before clinical guidelines formally changed.  

Going beyond DOMINO-AD

DOMINO-AD has inspired further research that otherwise would not have been possible. Further analysis has shown that continued treatment of donepezil can reduce the risk of going into a nursing home for people with moderate to severe Alzheimer’s disease for up to 12 months.

In addition, research published in 2017 showed that continued use of donepezil was more cost effective than discontinuing treatment – meaning that more people have been able to keep taking the drug, allowing them to stay comfortable in their own homes with the people they love for longer.

Without the commitment of Alzheimer’s Society and our supporters, none of this would have been possible. 

It is now a known fact that Alzheimer’s disease and other diseases that cause dementia begin many years before symptoms appear. Changes such as build-ups of abnormal proteins and loss of brain cells are already extensive by the time obvious symptoms present, and it is recognised that future treatments should be given to people as early as possible to prevent progression.  

Spotting early changes in the brain 

But this was not always the case. Up until the mid-1990s, it was largely thought that the onset of dementia – a collection of symptoms such as memory loss and behavioural changes – represented the beginning or very early stages of disease. In this scenario, the optimal time for giving people potential treatments which could slow or stop these diseases were when symptoms began.  

Alzheimer’s Society’s research changed the field  

This idea was turned on its head by our research. We funded Professor Nick Fox – then based at Imperial College London – to investigate if early indicators of Alzheimer’s disease could be seen in the brains of people at risk before symptoms appeared.  

Individuals from a family with a rare form of inherited Alzheimer’s disease volunteered to have their brains scanned in the years leading up to the age when other family members had showed symptoms. It was unclear which participants would go on to get Alzheimer’s disease as they had not been assessed for the genetic mutation behind the condition. 

For four years, Professor Fox and colleagues scanned these individual’s brains using an MRI scanner, alongside performing tests assessing their memory and thinking skills. By comparing the MRI scans year on year, the level of brain tissue volume in certain brain regions was tracked to see if any changes occurred.  

Of the seven individuals scanned, three developed symptoms of Alzheimer’s disease during the study. And when comparing the brain scans from all people involved, the affected individuals showed consistent loss of brain volume in the years before the onset of dementia. 

This was the first physical indicator that Alzheimer’s disease caused brain changes before symptom onset and shifted the entire field’s idea about when these diseases truly began. 

Efforts to beat Alzheimer’s disease early 

Since this seminal work, researchers have found brain changes associated with Alzheimer’s disease can occur between 10 to 20 years before dementia onset. Knowing these diseases impact the brain before symptoms means we can try to treat these conditions to prevent or slow the onset of dementia, which impacts quality of life.  

Many clinical trials now try to treat people as early as possible in their dementia journey with the hope one day, the diseases which lead to dementia can be stopped in their tracks before they do.

The brain scanning technique developed in this work – called the boundary shift integral – is also widely used in global clinical trials of Alzheimer’s disease drugs to assess if potential treatments can slow or stop the loss of brain tissue.

Together, the donations from our supporters and the involvement of families impacted by dementia completely changed the outlook on when diseases like Alzheimer’s disease begin, and by proxy, when we can treat them.