I lecture Stirling University nursing students about my dementia

Speaking to nearly 100 first-year nursing and paramedic students, Joan Lyon has her young audience in the palm of her hand.

But Joan is not a university professor; A 75-year-old grandmother with dementia.

The retired Episcopal priest has called for a positive outcome from his 2023 Alzheimer’s diagnosis and has offered his help to the University of Stirling. Dementia Services Development Center (DSDC).

Joan now regularly talks to students about her daily life with the condition, navigating the online world and the importance of treating people with dementia with dignity and respect.

The university said Joan was integral to its success Dementia Being Smart The module is the first in the UK to include dementia design for undergraduate nurses and paramedics.

Joan also volunteers at DSDC, contributing to research into better designs for people with dementia and testing new dementia-friendly products from manufacturers.

Joan first realized something was wrong in 2022 when her sister and daughter noted that she was asking the same questions and sending them the same emails.

With her concerns, she went to the GP and after a series of tests on Hogmanay 2023, she was diagnosed with Alzheimer’s.

Joan said the diagnosis was no surprise.

“I knew there was something different,” he said. “This wasn’t normal forgetfulness that gets worse as we get older, this was different.”

A chance encounter with her dog Bella during a walk on the University of Stirling campus led to her involvement with the dementia centre.

He said: “I was often walking past the Iris Murdoch Centre, reading her books, and she had a form of dementia.

“I thought I was wondering what was going on here, so I went in and asked.”

Dementia affects an estimated 90,000 people in Scotland.

DSDC senior dementia care consultant David Wilson-Wynne said he “grabbed the opportunity with both hands” when Joan offered him help.

He said: “It is not common for individuals to come to the center and ask to be involved in the work we do.

“I explained to Joan what the Dementia Awareness modules were, gave her an overview and said ‘pick whatever you want’.

Glasgow-born Joan lives in Papua New Guinea, Luxembourg and various parts of the UK, from Suffolk to Aberdeen, and has four children and five grandchildren.

He was no stranger to university, as his first job after graduating from the University of Strathclyde in 1970 was a year of administrative work in Stirling’s French department.

He said: “Given his early diagnosis I thought maybe I could be of some help.

“So I was welcomed with open arms.”

Joan began offering her assistance with studies and workshops at DSDC.

The invitation to speak to students “came out of nowhere,” he said.

Joan said: “I thought I could do it because I was used to public speaking.

“We try to put a personalized approach to this here by saying that we are real people, we are not a number, and we all respond differently.

“My speeches are not about ‘This is what Alzheimer’s disease is like’, I said this is my experience so far.

“I think it’s about saying that anyone can get Alzheimer’s.”

David said he was a “big believer” in a person-centred approach to dementia care.

He said: “For me it’s always about giving Joan that choice and having control over what she wants to talk about, share her journey.

“I can stand up and give a lecture about dementia and maybe reduce them to tears, but Joan can stand up and be the real expert here.

“Joan is the person we need to listen to because she is the voice of lived experience and it helps inform everything we need to do.”

During the lecture, Joan told students she was “still adequately prepared” to take advantage of the help available.

The woman, who said one of her sons helped her “with the financial side of life,” said she was afraid of being “treated like a child and not given a choice.”

Joan said feedback from students had been “overwhelmingly positive”.

He said: “I realized from the attention in the room that there was no one chatting at the back table.

“They were all interested because they knew they would encounter this in their careers.”

Katelin Denney, a first-year mental health nursing student, said she thought Joan’s class was “awesome.”

He said: “I’ve never met anyone with Alzheimer’s or dementia before.

“I really appreciate that he said he doesn’t like to be talked about or made fun of when people are talking.”

Rory Clark, first-year adult nursing student, said: “I thought Joan’s lecture was really inspiring.

“I think I always imagined someone with dementia as confused and lost, but Joan was really well, really put together.

“It has definitely changed my perception of what someone with dementia actually looks like.

“So I think it will definitely change the way I care for patients with dementia in the future.”

First-year adult nursing student Connor Walker said: “It was really impressive. I’ve cared for people with dementia before but it can be a bit clinical.”

“It’s all about care plans and more sometimes making decisions for people.

“So it was really fascinating and quite touching to hear about his experiences.

“I had this prejudice when I heard someone with dementia was going to speak (speaking), but I think it’s great that he’s doing it to the best of his ability.”

First-year nursing student Kerry Aitken said: “As I stood there I had no idea I had been diagnosed.

“His insights into his day-to-day life, how he coped and how he got by were very enlightening to me.”

Joan still lives independently and continues to drive, but is now required to have an annual driving evaluation.

He said he will “play it by ear” when it comes to teaching in the coming years.

Joan said: “I hope I can still do this.

“I am aware that my condition is declining or improving.

“I am more forgetful and can get more stressed about getting ready for things and remembering to take things with me.

“And there will come a time when I can’t do this anymore, I don’t want to embarrass my audience.”

Stirling is the only university in the UK to make the dementia module compulsory for all nursing and paramedic science students.

David said: “We have first-year students who are now in third year, and they openly ask me how Joan is, how she is doing, and I think that really explains it all.

“Joan does what she wants to do. She has control, she has choice, she is confident, and she talks to students, not like students.

“He talks to them like people.”

Joan’s work with the University of Stirling has recently Great British Care Award.

Judges said Joan was “a courageous advocate for people living with dementia who left a lasting impact on future generations of compassionate clinicians”.

Meanwhile, Joan wants to continue her studies and hopes other universities will follow suit.

He said this should be spread throughout the country.

“I think there is not enough education about how common this is.

“It’s been great, it’s helped my brain, it really works, it makes me work, so it’s good.”