Most of us would feel a mixture of sadness and fear if given a diagnosis of dementia, especially if we anticipate symptoms of impaired reasoning, memory loss and personality change. Dr Helen Courtney-Pratt, however, has gained a different perspective.

‘The more I work directly with people living with dementia, the less I worry personally about getting it,’ Dr Courtney-Pratt said.

‘People with dementia are intelligent and joyous, but I think we often associate the condition with those end-point symptoms that significantly impact on a person.

‘So if I was diagnosed today, I wouldn’t be any different tomorrow. Eventually dementia would limit my life, but until it did, each day would be a chance to be in the moment, enjoy the company of others and feel delight.’

Sadly there is such a stigma around problems with the mind that society’s preconceptions can prevent those living with the impact of dementia from experiencing life to the full.

Dr Courtney-Pratt’s focus is about respecting the individuality of people living with dementia and enabling opportunities for them to make judgements about the support that might work best for them. At the core of her diverse research and teaching is the desire to hear and champion the voice of those living with the condition.

‘I’m still here’

One of Dr Courtney-Pratt’s areas of current research is a project in which she is working with people living with dementia to create conversation cards for the community. Based on the familiar idea of using images and thoughts on postcards as conversation starters, Dr Courtney-Pratt and her collaborators are meeting with people with dementia, taking photographs and capturing the messages that they want the community to know.

An example of how this works is a picture the team took of a group of people living with the impact of dementia as they strolled away from the camera. When Dr Courtney-Pratt showed this photograph to one man, he posed a question: ‘How many people with dementia have you seen today? You probably wouldn’t know.’ Another fellow picked up the same photograph and commented: ‘Yes, I have dementia, but don’t turn your back on me.’

Dr Courtney-Pratt said these types of messages are typical of what people living with dementia want the rest of us to hear.

‘One of the key messages is that I’m still here,’ she said. ‘Dementia doesn’t define you as a person.’

The space to grow at Wicking

A respect for the expertise of individuals has been a thread woven through Dr Courtney-Pratt’s career – from working as a registered nurse in the healthcare sector to exploring support for undergraduate nurses in clinical placement. She currently coordinates a unit in the Bachelor of Dementia Care on the creation of dementia-friendly societies, and is also a collaborator on an awareness project in which carers share their experiences to support others in the same role.

‘So I’ve come into this niche of community engagement within dementia research from the perspective of enabling others to have a say in what happens for them, with them and to them,’ Dr Courtney-Pratt said. ‘It’s about equity and fairness and integrity.

‘Wicking is a special place because it provides the intellectual space to do this sort of research. This scope is all related to the different disciplines within Wicking; while I am one of a number of nurses, Wicking also boasts psychologists, pharmacists, scientists, nutritionists and so on who all work together.

‘This diversity of backgrounds encourages you to think broadly and allows you to invite colleagues into your area of focus, which in my case is community involvement. Connecting students and colleagues with some of the people for whom they want to make a difference has been a small amount of the work I do, but one that I think is important.’