Research

Honouring a couple affected by dementia for their contributions to dementia research

Carol’s relationship with Alzheimer’s disease began in 1983 when her father was diagnosed. Within three years of this, four of her father's siblings also received a dementia diagnosis.

At the time, it was generally believed that our genes did not play a role in Alzheimer’s disease. However, following her family’s experience, Carol began to question this assumption and took an interest in Alzheimer's research.

From 1986, Carol pressed for research into a possible genetic cause of Alzheimer’s.

Learn more about Carol and Stuart and why we're honouring them for their achievements in the video below:

Participating in dementia research

Carol and the Jennings family's involvement in research began with Alzheimer’s Society. Carol, passionate about understanding the condition affecting her family, responded to an advertisement that was placed in an Alzheimer’s Society newsletter.

The advert was from then Dr John Hardy and Dr Martin Rossor (now Professors) at St Mary’s Hospital. The researchers were looking for families with two or more members affected by Alzheimer’s disease.

Carol was the first person to put herself and her family forward for investigation.

As a result of this courageous decision, Professor Sir John Hardy’s study (jointly funded by Alzheimer’s Society and the Medical Research Council) identified a key gene. This provided the first evidence that a protein called 'amyloid' contributed to familial Alzheimer’s disease.

This led to the development of the ‘amyloid hypothesis’ – a theory about the underlying causes of Alzheimer’s disease.

A passion for dementia research

Since the breakthrough study, Carol and Stuart have travelled the world raising awareness of the need for dementia research and challenges facing people affected by the condition. Stuart says:

If we are going to bring this disease, that so many of us have had to live with – our parents, partners and siblings – to an end, research and understanding is essential.

Today it is known that in the majority of cases, Alzheimer’s disease is not directly inherited through generations – although some genes may increase or decrease our risk of getting the condition. However in rare cases, Alzheimer’s disease can be directly inherited, as was seen in the Jennings family. 

A new direction for the dementia research community

The discovery of the involvement of amyloid protein in Alzheimer’s disease made by Professor Sir John Hardy defined a generation of research. The results of the study immediately galvanised the research community to build on the findings.

It sparked global interest in dementia.

Researchers raced to find treatments to target the cause of the diseases underlying dementia, rather than just treating symptoms.

Additional research breakthroughs

Following Professor Hardy’s work formulating the ‘amyloid hypothesis’, the number of new clinical trials targeting Alzheimer’s disease increased rapidly from just 10 in 1999 to 120 a decade later. Hundreds of clinical trials have been started to date.

This represents an investment of billions of pounds that has helped build our understanding of dementia, and supported world-leading researchers in the field. Stuart says:

For Carol, early diagnosis and a greater ability to limit or even slow down the progression of dementia was essential.

Over the last couple of years, we have begun to see new treatments with – for the first time – the potential to slow down the progression of Alzheimer’s disease, such as Lecanemab.

A breakthrough like this wouldn't have been possible without the support of Carol, her family, and the work of Professor Sir John Hardy.

Carol's dementia diagnosis

Sadly, Carol herself is now in the later stages of Alzheimer's disease and is cared for by Stuart. He says:

'When Carol was first diagnosed, she knew what was coming as she had seen it with her father.'

Her enthusiasm, her willingness to be vulnerable, speak about her family, and be involved in drawing attention – even as dementia has ravaged her – has aided research considerably.

'The journey began with Alzheimer’s Society, and as we draw to the end we have to be realistic. But Alzheimer’s won’t have the last word. We’ve not given up, we’ve fought it all the way.’

Honouring Carol and Stuart for their contributions

Alzheimer’s Society is pleased to honour both Carol and Stuart by offering them the position of Vice-Presidents, acknowledging their extraordinary contribution to the field of dementia research.

We are also delighted to be awarding a ‘Carol Jennings research fellowship’ for the first time this year in Carol’s honour. We hope this will continue her legacy.