Professor Debbie Tolson on dementia: As a professional, I knew exactly what to do… as a daughter, I had no idea

AS an experienced nurse, respected internationally with an impressive list of academic accolades under her belt, Professor Debbie Tolson thought she knew a bit about dementia.

“It was only when my mother was diagnosed that I truly understood what it means to have dementia in your life,” she explains.

“As a professional, I knew what I had to do. As a daughter, I had no idea. And that shocked me – I was as lost as anybody else and I hadn’t expected to feel like that.”

Professor Tolson’s mother died in December 2012. A few weeks later, Professor Tolson took up the position of Director of the Alzheimer Scotland Centre for Dementia Policy and Practice, a joint partnership between the University of the West of Scotland and Alzheimer Scotland, based at UWS’s Hamilton campus.

It was, she says, “the perfect job”.

“I hadn’t planned to move – I was Professor of Gerontological Nursing, leading an interdisciplinary Later Life Research Group within the Institute for Applied Health Research, at Glasgow Caledonian University,” she explains.

“But when I saw this post advertised, I couldn’t resist it.”
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In a career which began in London, where she studied nursing and became a ward sister at the age of 23, Professor Tolson has built up a national and international reputation for her work in the care of older people and particularly, in the field of dementia studies.

In 2010, St Louis University (USA) Medical School awarded her the Jim Flood Memorial Alzheimer Disease Distinguished Lectureship; she is a Fellow of the Royal College of Nursing UK, and an Honorary Fellow of the Queen’s Nursing Institute in Scotland; she has produced more than 100 peer reviewed research papers, national care guidance for nurses and patients, and edited books; and just this month she was awarded a Principal Fellowship of the Higher Education Academy (HEA) – the highest level of teaching recognition in the UK higher education system which is only awarded to the most outstanding educationalists.

But Professor Tolson is, she stresses, and always will be, a nurse.

“I didn’t know what I wanted to be when I left school,” she explains, as she offers a tour of the teaching rooms at the centre.

“I had an idea about physiotherapy, but my mum, who was a nurse, suggested I try that and I did.

“I was one of the first nursing degree guinea pigs, at London’s Southbank Polytechnic and Guy’s Hospital. I really enjoyed that course.

“But I was still sitting on the fence about what I would do next when I graduated, so I took a rotation staff nurse job, which gave me experience in different areas – surgical, medical and care of older people.”

Ironically, Professor Tolson had almost decided to drop the last placement, but she changed her mind.

“I haven’t looked back since,” she smiles. “I realised as soon as I started that placement that it was in this area, in care for older people, that I could make a difference. Because a nurse can make a difference, not just in the moment of care, but in changing the way we think about older people and people with dementia.”

She pauses. “And yet, I spent many years having to defend myself. People would ask, why do you want to work with older people? It’s not the most popular branch of nursing.”

Professor Tolson admits to feeling disheartened that those attitudes prevail.

“It’s disappointing when I hear students, who have been very positive before going into older people care placements in hospitals or GP surgeries, coming back having had their enthusiasm quelled by careless comments by existing practitioners,” she frowns.

“Things are changing – well, policy rhetoric is changing but policy is only a direction of travel. We need to be brave. There needs to be a radical overhaul in how we prepare nurses to work in an arena of integrated health care.”

The desire to make UWS Scotland’s first ‘dementia-friendly’ university is something Professor Tolson and her team are working hard to realise.

“One of our areas of research focuses on those people given a diagnosis of dementia while still at work,” she explains.

“Of the 90,000 people living with dementia in Scotland, around 3500 of them are diagnosed while still in employment.

“So as well as recognising that students and staff may have caring responsibilities in their lives that extend to looking after elderly relatives or relatives with dementia, being ‘dementia-considerate’ is also about recognising our role as an employer and looking at how we can help our own staff who may get a diagnosis.”

Professor Tolson is also leading a European-wide research project called Palliare, which looks at advanced dementia.

She explains: “This is the stage before someone is dying but is highly dependent upon others for their care, and it can last for months, or for years. Surprisingly, we don’t know that much about this stage – it’s one of the most neglected areas in terms of research and upskilling practitioners.

“We are trying to get physicians, nurses and families to work together to understand – what is best practice here? We are also developing teaching resources which will be delivered in seven countries.”

The project has been shortlisted in The Guardian University Awards, and Professor Tolson and her team will find out who has won on Wednesday.

“We’re delighted to have that recognition, but I think what has been especially rewarding for me is that we have challenged the way people talk about advanced dementia,” Professor Tolson says.

“It’s already having an impact on discussions taking place in Scotland but also in our partner countries.”

She smiles: “Ever the optimist, I think if you can stimulate discussion and curiosity amongst the policy makers, that can only be a good thing.”

Professor Tolson is particularly proud of the work being done at UWS.

“I’m really proud of helping to build a strong centre here with a great student team, fantastic staff, attracting funds for studies that might otherwise be neglected,” she says.

“I have a fabulous role here – at the heart of it is helping people do their best, whether students, student nurses or those working with people who have dementia, but also helping those who have been diagnosed with dementia to have the best lives they can, have fun, have opportunities, be valued members of society.”

Dementia is, says Professor Tolson, currently a “hot topic” in terms of policy and practice development.

“Every family in Scotland is touched by dementia in some way,” she says. “We have become more sophisticated in diagnosing it but until we achieve effective prevention and treatment, we have to find ways of helping people have better lives once they get that diagnosis.”

She returns to the subject of her own mother’s care.

“I saw the impact it had on my dad, who was in his late 80s – they lived in London at the time and as my mother’s dementia advanced I went down to care for her round the clock.

“And it’s then, when you are sleep deprived, when you don’t know what to do in a moment of crisis, that you truly understand how difficult it is for someone with dementia and for those caring for them, and for people like me – working daughters, living at a distance.”

She adds: “I brought that experience, with a passion, into my work. I hope I have got my emotions in control with regard to that and I understand the importance of really listening to what families are saying. Ultimately, what we are doing here is really asking – how can we help you have a better day, or a night’s sleep?”

Professor Tolson’s job is a demanding one, but, she laughs, she likes to “work hard and play hard.”

“I came to Scotland because of a man – my husband, Steven,” she smiles. “I love walking in the Scottish mountains. Nothing beats getting out in the snow and escaping north.”

She was also recently recognised in The Herald’s sister newspaper The Evening Times’s Scotswoman of the Year award, making it on to the final shortlist.

She has two sons – Jonathan, 24, and Robert, 22 – and grimaces at the memory of a colleague who once told her that “pregnancy was a career-limiting move”.

She frowns: “That really shocked me. I was four months pregnant at the time. I think I proved them wrong.”

Source The Herald