At Newcastle University, our researchers have spent decades advancing the understanding of Dementia with Lewy Bodies (DLB).
Their pioneering work has redefined DLB as a distinct and common cause of dementia, improving diagnosis and treatment worldwide. This dedication has now been recognised with the prestigious Queen Elizabeth Prize for Higher and Further Education.
DLB is the second most common form of dementia after Alzheimer’s disease, affecting around 130,000 people in the UK. Symptoms include hallucinations, fluctuating alertness, and movement problems similar to Parkinson’s disease, such as slow movement and tremors.
We spoke to Nigel Thomas from South Tyneside and his wife Heather, who shared their experience of Nigel’s diagnosis and the care they have received.
How has DLB affected you?
Nigel: I have lost some confidence in being independent. I now rely on my wife to organise much of my life, although I do many of the basic household activities. Not being able to drive is still frustrating to me although Heather is a willing chauffeur. Sometimes I am forgetful of recent conversations especially if the content is of no interest to me. I find it difficult to engage in conversations with more than eight people, and technical terms occasionally elude me.
Before diagnosis and during early treatment I was confused, as I couldn’t understand what was happening to me. I know that some of my behaviour has changed; for example, I have become obsessive in ensuring I was carrying my wallet, spectacles and phone. I have also become slower in movement, and I have lost some height.
Lewy Bodies has not however affected my ability to speak, read and write, and to continue to be fluent in English or any of the foreign languages (especially French, German and Italian) that I have learnt.
What is particularly important to me is my passion for military history. I have retained the core knowledge, but prior to treatment by Newcastle University, I did struggle with using my iMac. Now I can do this independently and in fact I am at present updating my rank insignia charts for an important commission, which is a source of pride for me.
Heather: DLB has affected me in many ways. Firstly, to be defined as a ‘carer’ was a surprise, even though I was in fact caring for Nigel. By my late 70’s I’d had many roles - student, educator, parent, and wife. Marriage was a partnership whilst we were independent of one another with regard to our careers, study, friendships, etc. Nigel’s diagnosis meant that he was dependent on me, and I lost much of my independence. I now manage all aspects of running the house and finances, our daily living, driving, and I organise my life around his diary.
It was very difficult at first for relatives, friends and casual acquaintances to understand Nigel’s condition, which was quite frankly upsetting. Nigel didn’t appreciate his decline physically, and only recently have we engaged in discussing this aspect of DLB. Fortunately, most people closest to us are now interested and helpful.
Quite frankly, without the support of Newcastle University, Nigel would have been dependent upon daily or even residential care. Without a diagnosis and the remarkable treatment life would have been almost intolerable. Meeting Professor Jean-Paul Taylor and his team transformed our lives.
However, the fact that Nigel is wholly functioning intellectually is a blessing. We discuss our shared interests in history, politics, media, and news. The Times General Knowledge Quiz during the coffee break is a ritual. I have always supported Nigel in his writing and research on military uniforms (he owns thousands of books and he has written forty himself). He is still actively involved and is currently working on a commission.
My sister says that Nigel is the happiest person she knows.
Nigel and Heather Thomas enjoying a family wedding
How has being supported by Newcastle University helped you and your family?
Nigel: Newcastle University has supported both my wife and I in coping with the stresses of Lewy Bodies from the outset, giving us all greater confidence to face the unknown.
I dread to think what my circumstances would be if we had not met Professor Jean-Paul Taylor and his team and received comparatively early intervention with a tailored regime of vital medication, which is constantly reviewed. Furthermore, I am appreciative of the team’s sensitivity, consideration, referrals and constant academic enquiry.
Initially I found it difficult to explain my condition to the wider family and friends. As a result of the insight into my condition that Newcastle University has provided we can now discuss Lewy Bodies without embarrassment.
Heather: Quite frankly without the support of Newcastle University, Nigel would have been dependent upon daily or even residential care. Without a diagnosis and the remarkable treatment life would have been almost intolerable. Meeting Professor Jean-Paul Taylor and his team transformed our lives, and I can list how:
- The medication which is frequently adapted in accordance with Nigel’s response is ground-breaking.
- Arrhythmia was diagnosed by the Professor, enabling the implant of a pacemaker, which was rejected by our local hospital.
- Referrals for speech and physiotherapy are invaluable.
- The opportunity to engage in research studies provides optimism, as well as being able to contribute to the work of Newcastle University and society as a whole.
- The classes and forums organised by Dr Alison Killen and her team have been invaluable, providing engagement and information which is not available elsewhere.
- We appreciate being treated as equals by the team rather than as old and clueless people, which is our experiences in other health contexts!
You are a real supporter spreading the word about DLB - why is this work important for you?
Nigel: I am grateful that the University is demystifying Lewy Bodies. It's important that it's widely understood that although technically a form of dementia, it's not the same as more recognised conditions such as Alzheimer’s Disease.
If the wider public could cease to be judgmental and instead assume that someone displaying Lewy Bodies may have a limited physical capacity and blemished appearance, but can also have a high IQ and can function more or less normally.
I believe that Newcastle University has the ability to change perceptions, and that this development is in fact already happening.
What does it mean to you to know that Newcastle University is a pioneer in this field?
Nigel: By coincidence Newcastle University has been the foundation of my academic career. I was awarded an MA in German History and Literature by the University in 1980. This led to me being appointed Senior Lecturer in Modern Languages at Northumbria University, being awarded a University of Birmingham PhD in German Politics, and becoming a Principal Lecturer.
Newcastle has always been my favourite university (of the five where I have studied), and it retains a high reputation amongst the Russell Group universities. Newcastle University’s work in this field gives me confidence that I have access to the latest research, and it is a privilege to participate in any programmes. I am also impressed by the quality of all the staff.
Heather: As a proud Geordie, I have always promoted my heritage and referenced the attractions as well as the great institutions we have in the area.
I have always seen Newcastle University as a flagship institution, so it is a privilege to see the university gain the well-deserved recognition nationally and internationally for its exemplary research into DLB. Long may it continue.
Successful collaboration between Newcastle University and the Newcastle Hospitals is also commendable.
Is there anything you wish to add?
Nigel: My gratitude is also to the Newcastle Hospitals for my initial diagnosis, its treatment for REM Sleep Disorder and latterly to the Movement team. The fact that the hospitals and Newcastle University collaborate closely in caring and support is extremely impressive.
Heather: We are very fortunate at being patients at an exceptional GP medical group and that there is a first rate pharmacy close to our home that delivers our medication.
Find out more
- read the press release: Royal recognition for University’s Dementia work
- learn more about our research into dementia and the work of the Lewy Body Lab
- read about the DIAMOND-Lewy Programme – focused on improving diagnosis and management of Lewy body dementia across the NHS
- find out how you can support research into Dementia with Lewy Bodies at Newcastle University
