Portrush psychologist launches support book for dementia carers

Dr Frances Duffy, Consultant Lead Clinical Psychologist for Older People in the Northern Trust, was one of the professionals who developed the books which are being distributed across Northern Ireland to GP practices, care homes, staff working in dementia care and carers of people living with dementia.

Dementia is on the increase with an estimated 22,000 people living with the condition in Northern Ireland. It is a life changing condition for the person and also for those who love and care for them.

Carers can sometimes struggle to understand changes in the person with dementia. At times they don’t know what to say or do and, sometimes, without realising it, they can say or do things that can increase distress.

Dr Frances Duffy, Consultant Lead Clinical Psychologist for Older People in the Northern Trust explained: “It’s easy for us to forget sometimes that our understanding of what is happening in a situation may be very different from what another person believes is happening.

“There are also many ’invisible’ experiences of physical ill health and discomfort and of psychological distress that affect our behavior. These include pain, infection, fear, confusion, low mood and many more. If a person with dementia cannot tell us what they want or need, or how they feel, we may not know.

“As the person with dementia tries to meet their needs, they can present with behaviours that carers find difficult to understand, often called ‘challenging behaviour’. What’s really happening is that the person is just trying to get on with their life in a world that has become confusing. This can lead to significant distress for the person with dementia and their carers.”

The books are based on the principles of CLEAR Dementia Care©. This model has been developed to help us see the whole person with dementia.

When we understand the perspective of the person, we can find ways to reduce potential distress. The outcome is enhanced quality of life for the person with dementia and an empowered and confident carer.

Dr Duffy continued: “The books were created by myself and Jill Richardson, who is an Associate Psychologist for Older People in the Northern Trust in collaboration with Flickerpix Ltd. We would like to thank Dementia eHealth and Analytics Pathfinder Programme and the Health and Social Care Board for their support to enable this book to be produced. We are extremely excited to launch them.

“We have designed the books to make it easy to understand the perspective of the person with dementia without having to read a lot of text. Each book has examples of clearly illustrated scenarios commonly experienced by people with dementia whether living in their own home or in a care home. The illustrations are designed to show what would be unhelpful and helpful responses in each scenario.

“The illustrations highlight that, sometimes, what the carers and care staff think is happening can be very different from what the person with dementia thinks is happening. When these two perspectives are different there is the opportunity for stress and distress for both the person with dementia and those who love and care for them. The books highlight that carers can make small changes to reduce distress. The books help carers to see the perspective of the person with dementia.

“The books have the potential to significantly improve dementia care and quality of life for both the person with dementia and their carers. When a person living with dementia doesn’t fully understand what is happening or can’t tell others what they want or need, they can become distressed and this can cause increased stress for carers. As dementia progresses, carers can find it difficult to cope with changes in the person’s ability. This can leave carers feeling helpless and exhausted.”

The books follow the recently launched CLEAR Dementia Care App which is available to download for free now on Apple and Android devices. It is the first comprehensive App of its kind dealing with the professional care of a person with dementia.