I am living with Lewy body dementia; it doesn’t define me

For the last 20 years of my career, I was a senior lecturer at a university teaching graduate and undergraduate nurses, medical staff and allied health professionals, predominantly in critical or intensive care.

I loved teaching. I was never one of those lecturers who would sit at a desk and put up a PowerPoint. I would get into discussions with my students, and I would walk around the room and talk. I loved being in a classroom and exchanging information and knowledge.

Spotting the early symptoms

Pinpointing when I first noticed the symptoms of dementia is really hard, but I think they began in around 2015. I would go shopping and forget things or leave my wallet at home; I would go into a room and not be sure why I was there. There were occasions when I literally didn’t know where I was even though I was in familiar surroundings. I started to make a note of how frequently I was being forgetful.

I also developed a tremor. I used to mend clocks and do model-making and watercolour painting, which require fine motor skills, and I was finding them increasingly hard to do.

My symptoms started to have an impact on my working life. As a personal tutor at university, I would tutor a group of 30 students from the first year through to them qualifying, and I started to notice I couldn’t always remember their names. I began to find it difficult to navigate the spreadsheets I used at work, and in meetings I would want to say something but find it hard to recall the right words.

Getting a diagnosis

In July 2019, I contacted a GP and said, “I think I may have a memory problem.” A nurse did a quick memory test and said I was borderline so it would be worthwhile me being seen in a memory clinic. In July 2020 I was given a diagnosis of mild cognitive impairment, and I was referred to a neurologist because of my tremor.

The neurologist confirmed that there was something not 100% right and suggested scans and a lumbar puncture. Following these tests, I was referred to a specialist neurologist in September 2021, who told me that based on the results, I fulfilled the criteria for Lewy body dementia.

For me, it wasn’t devastating news. It was reassuring that I now had a clear path for moving forwards and could look into what treatments were available and how my condition might progress. Receiving the diagnosis was positive and I’m very grateful for that.

Working with mild cognitive impairment

When I was diagnosed with mild cognitive impairment – before my full diagnosis of dementia – I was aware that my symptoms were impacting my work, so I made the decision to step down from my managerial role on health grounds. The university was extremely supportive, suggesting I trial it for six months to see how I got on.

But that same week, the country went into the first Covid lockdown. We went from interpersonal relationships to working online and that was something I found very hard to adjust to. But my colleagues were very supportive and understanding. They were nurses so had empathy, understanding and insight and that made a huge difference.

While my diagnosis was mild cognitive impairment, life was alright. Everyone was keen to support me with the symptoms and move forward. But as soon as the word ‘dementia’ made an appearance, it was like a rabbit in headlights.

By the time I got my diagnosis of Lewy body dementia, I’d had an assessment for Access to Work, which was very useful, and was having regular meetings with an Occupational Health Consultant. He said, “We need to support you in your role for as long as you feel you can continue,” and I felt totally supported by him and my line manager.

Things changed after my dementia diagnosis

Then the university then went through some significant changes, and I lost my line manager who had been outstanding. My new manager wasn’t a nurse and didn’t know anything about Lewy body dementia. I’d always had my own office, which suited me, but I got moved into an office with other people and with hardly any natural light and from that point on things just went downhill.

Human Resources (HR) had no concept of neurological diseases or experience of dementia in the workplace. There is no national guidance about what to do if an employee is diagnosed with dementia, or to stop employers treating people as though they are immediately ‘ga-ga’.

For my HR Team, the word ‘dementia’ was terrifying – immediately it was, “Phil shouldn’t be doing this and that.” I suggested working with them to create guidance so they could learn from my experience in case another employee was diagnosed with dementia, but they never contacted me.

After my diagnosis, I notified the Nursing and Midwifery Council and no longer did any clinical practice; I just taught. Everything that I taught was recorded so that my colleagues, if they needed to, could check that I wasn’t giving duff information. I also told three or four of my colleagues and students about my condition so they could filter information to me or to someone else if I said or did something out of kilter.

The plan was for me to work until I was 65 but I retired when I was 60, so I’ve missed out on five years of full-time income. However, I’m just grateful that I was able to work from September 2021, when I got my diagnosis, to when I retired in October 2023. That was because of good support in the initial stages, and my awareness of being able to manage my condition. Otherwise, I think they would have erred on the side of, “Bye bye.”

Tips and advice for to employers

My advice for employers is first of all, don’t panic just because you hear the word ‘dementia’. Secondly, keep talking to the person who has dementia about the positive contributions that they can make to their organisation. And third, listen to the expert in the room – the person with the diagnosis – about what they can and can’t do.

Please don’t write the person off. I passionately believe that we are not a burden on society just because we have dementia, in the same way that a pregnant woman, a diabetic or person with cancer isn’t. So why do people think that if you have dementia, you are less than anybody else?

Society and employers see the word ‘dementia’ and they either run screaming, or they put a line through your name. What they need to do is a risk assessment for that person and keep reassessing it over time.

Tips and advice for a person with dementia who is working

If you receive a diagnosis of dementia, you are the same person as you were before. It is nothing more than a label that someone has given you.

Don’t make any rash decisions about employment at all. Do nothing. Continue. Talk to your loved ones or somebody else about what you want to do; talk to your employer; go to Occupational Health. The most important thing is to decide what you want to do and then find a happy medium.

Keeping active since retiring

While I have got the ability, I want to try to help. The only way I can fight dementia is by keeping myself as cognitively active as I possibly can, so why not do all the research; why not go to meetings; why not try to influence? Why not try to do these types of things – because that is something I can do before I get to the end point.

I’ve learnt so much more about dementia since joining various research groups, because I’ve interacted with different people. It’s absolutely brilliant.

I am still Phil. I am living with Lewy body dementia; it doesn’t define me. It restricts me in some respects, but it does not define me.

*Phil is 62 years old and is married to Debbie. They have two adult children and live in Ashford, Kent.