Member showcase: Phil Angrave

I’ve been a registered nurse for over 40 years. I was a charge nurse in an intensive care unit, then I went into management in the NHS and then 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.

I specialised predominantly in critical/intensive care and I loved teaching. I was never one of those who would sit at a desk and put up a PowerPoint. We would get into discussions, 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 symptoms is really hard – I think I was symptomatic from about 2015 onwards. I would go shopping and forget things; I would go into a room and not be sure why I was there; I would forget my wallet and 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, and I noticed I had a tremor. I used to mend clocks and do model-making and watercolour painting which require fine motor skills and I was finding them hard to do.

As a personal tutor at university, I would have a group of 30 students who I would tutor from the first year through to them qualifying and I started to notice I couldn’t always remember their names. We used Excel spreadsheets for management purposes, and I started finding them difficult to navigate. In meetings I would want to say something but find it hard to recall the right words.

Getting a diagnosis

In July 2019, I made contact with my 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. A year later, in July 2020, I was given a diagnosis of mild cognitive impairment and 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. In September 2021, I was referred to a specialist neurologist who told me that based on the scan 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 it might progress. Receiving the diagnosis was positive and I’m very grateful for that.

Working with mild cognitive impairment

But before getting my diagnosis, I was aware of my symptoms so I made the decision to carry on working but step down from my managerial role on health grounds. The university was extremely supportive suggesting I did it for six months to see how I got on. I did this in March 2020, the week of the Covid-19 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 and insight and that made a huge difference. At that stage, I was just being investigated – it wasn’t dementia – so it was very much, “Let’s just support you with the symptoms and move forward.”

I had an assessment for Access to Work which was very useful and had 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. All the time it was mild cognitive impairment life was alright, but as soon as the word ‘dementia’ made an appearance, they were like a rabbit in headlights.

Things changed after my dementia diagnosis

The university 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, but I got moved into an office with other people and hardly any natural light and from that point on things went downhill.

Human Resources (HR) had no concept of neurological diseases. There is no national guidance about how to approach it, or to stop them from treating people as though they are immediately ga-ga. For them the word dementia was terrifying and immediately it was, “Phil shouldn’t be doing this and that.” They had no experience of dementia in the workplace at all. I suggested working with them to create guidance so they could learn from my experience, but they never contacted me.

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.

It had always been my intention to work until I was 65 but I retired when I was 60. 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 dementia 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 things, otherwise, I think the university 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 all of the positive contributions that they can make to your organisation. My third thing would be to listen to the expert in the room – the person with dementia – 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 look at 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 on that person and maintain that risk assessment 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 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, go to meetings, try to influence and do those 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 restricts me in some respects, but it does not define me.

• Phil is 61 years old and is married to Debbie; they have two children and live in Kent. Phil is a valued member of the Young Dementia Network research workstream.