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Improving the lives of people with dementia

31 March 2020

Carer looking after woman

An expert in the communication challenges caused by dementia is using her research to inform training practices for carers and families.

Professor Alison Wray of Cardiff University has spent a decade studying the social and emotional impact of dementia and its onward effect on communication. Her detailed understanding of the causes of communication breakdowns in the dementia context is being used to formulate training and advice for people around the world.

Around 850,000 people in the UK have some form of dementia, with this figure on the rise.

Professor Wray’s work forms the basis for a new book, The Dynamics of Dementia Communication, was published in March.

Based in the University’s School of English, Communication and Philosophy, she said: “Dementia is a very complex condition that affects every aspect of a person’s experience, with considerable knock-on effects for family members, professional carers and wider society. Relationships are often severely challenged by dementia, and it can be difficult to keep them positive.

At the heart of many of these problems is our desire to communicate and connect. When this becomes difficult, people typically feel anxious and frustrated. It’s easy to get into a downward spiral very quickly in the relationship. It can be difficult to remember that the real culprit of these problems is the disease.

Professor Alison Wray Research Professor

Through Professor Wray’s animated films with voiceovers by Sir Tony Robinson, her ideas have been adopted by carer trainers in the USA, Australia and New Zealand as well as the UK. One particularly fruitful relationship is with Six Degrees Social Enterprise, which runs Empowered Conversations, a free six-week training course giving carers practical advice to help them cope with the realities of living with dementia.

Dr Phil McEoy of Six Degrees said: “We see the feelings that people with dementia experience being preserved even when they experience serious cognitive decline that affects their ability to communicate.  Alison’s book and research is of immense practical value, it shows how it is possible to stay connected, maintain and make sense of changing relationships and preserve the quality of life of the person living with dementia.  We have included Alison’s work in the delivery of 43 courses to over 600 family and professional carers.”

One carer, who has been on the training, said: “That course (Empowered Conversations), of all the things I've been on had the most notable affect. I suppose it’s the reality that communication, conversing, however you want to describe it, is so key.”

Another said: “I spend a lot more time with my mum perhaps just sitting quietly and stroking her back or something like that. If I have a visit and it doesn’t go very well, mum doesn’t talk very much, I probably don’t feel bad about myself. I used to walk away thinking I've done that really badly.”

Professor Wray’s book, out on March 26, uses new theoretical perspectives to explain how the impact of dementia on the brain leads to not only the cognitive but also the social and emotional experiences typically experienced.

Professor Wray added: “Strong research is key to helping people live with the effects of this devastating condition. I am looking forward to continuing this important work so that those living with a dementia, as well as their families and professional carers, have the right tools to deal with it.”

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