Author Interview: Talking Sense Audiobook - Living with sensory changes and dementia by Agnes Houston and Julie Christie

Tuesday, 27 October 2020

Talking Sense: Living With Sensory Changes and Dementia by Agnes Houston with Julie Christie
Released: 19th September 2020
Published by: Dementia Centre
**Download a free copy of the book here!**
Talking Sense: Living with sensory changes and dementia, written by Agnes Houston MBE with Dr Julie Christie, is a popular print and online resource and now for the first time will be available as an audio book. This is one of the first audio books in the world to use dementia-friendly audio to ensure it is readily accessible for people living with dementia, along with carers and supporters. “We’ve created this new audiobook version of Talking Sense to support people who are more comfortable with auditory learning – particularly people with dementia who may find it difficult to read or focus on words on a page.” A/Prof Cunningham said. The audio book provides an opportunity for people with dementia to engage with helpful information and practical advice in a format which is especially tailored for their needs. Talking Sense is the culmination of more than a decade of research by Agnes Houston after she was diagnosed with younger onset dementia in 2006. She found that not only was there little support for continued independence, but what support there was had virtually no awareness of the common experience of sensory change. “It was as if I had been given a diagnosis, was assessed cognitively, medication monitored and left to my own devices,” Ms Houston said. “Instead, I chose to go on a quest for knowledge to understand what was happening to me. Surely, I was not the only one having these sensory changes?” Ms Houston is known internationally as an advocate for people living with dementia and in 2016, she completed a Churchill Fellowship to continue her learning about the often-overlooked issue of sensory challenges.
Last month I had the opportunity to attend HammondCare's international dementia conference, showcasing a range of speakers and events surrounding topics on residential care design, different approaches to caring for people living with dementia and emerging research/educational resources being published in the area. With a rise in Australia's ageing population and the need for increased services and resources specifically directed at understanding dementia and how it affects people's lives, I believe that books like Talking Sense are more important than ever to raise awareness on this important issue. More information can be found on the Dementia Centre's Knowledge Hub here

Author Interview

How did the idea for writing Talking Sense first come about? Were there specific gaps in current literature and resources for carers and people living with dementia which acted as a key influence?

Agnes: I was diagnosed with younger onset dementia of the Alzheimer’s type in 2006.  My care afterwards was in the hands of the old age psychiatry service.  It consisted of a dementia ‘early onset’ nurse to monitor my medication and my cognitive function. I found it to be a negative experience, which was all about loss.  There was no attention paid to my sensory challenges, no rehabilitation programme and no counselling.  I felt as if my care was out of my hands. I consulted my optician who knew little about dementia.  My GP team knew little about the sensory challenges associated with dementia.  My psychiatrist made time to talk and listened to my experiences but I felt that little practical help was given to me. Something was missing.  It was as if I had been given a diagnosis, was assessed cognitively, medication monitored and left to my own devices.  Instead, I chose to go on a quest for knowledge to understand what was happening to me.  Surely, I was not the only one having these sensory changes.  This prompted me to ask other people living with dementia about their experiences. As a result, I produced in 2015 a booklet ‘Dementia and Sensory Challenges’ (funded by the Life Changes Trust in Scotland.  In 2016, I obtained a Churchill Fellowship to travel to other countries to learn more.  My findings confirmed the need for this handbook, which we hope will be a starting place for others to discover information on sensory challenges. Among other things, it shows who to go to for help, where support organisations can be located and how to access services and support.

What was the process for coming up with the idea of creating the work as an audiobook?

Julie: It was always our intention to have an audiobook. Talking Sense at its heart is about accessible information. Many of the people interested in this area are living with visual changes and so an audiobook is essential.

Agnes: As I previously was an army nurse, I was assessed for support by Scottish War Blind, who have been fantastic.Through their support I have learnt many skills for coping with sight challenges and have discovered how important audio versions are to ensure this information can be accessed by as many people as possible – friends supported by Scottish War Blind said is was “Always a hassle having to ask people to read it out to me”.

Through your research for the book in relation to dementia symptoms, what were some of the most surprising findings that general readers may not have expected?

Agnes: I was so surprised to discover that there isn’t a specialism and that people are expected to live with often severe changes without the support they might otherwise get with another health problem. You can get a test for hyperacusis, but it wasn’t being routinely offered. You need to ask for it – “the uncomfortable loudness test”. I was also surprised at the numbers of people having sensory challenges, which was higher than I ever anticipated and that these sensory challenges were causing them the most effect of their lives, rather than the memory problems.

Julie: From my perspective, as a nurse and a social worker, it was looking at the experience of sensory changes from the perspective of day to day impact. The ways in which sensory changes make you feel, for example, as a result of losing confidence in going out, the things you miss out on through this, the conversations you can’t take part in. Helping people to regain confidence or find new ways to self manage problems has been very rewarding.

How did you discover that sensory changes were a significant impairment associated with dementia?

Agnes: Many people who receive a diagnosis of dementia are aware that they may experience memory problems. But they are often surprised when they begin to encounter ‘unexplained’ sensory changes. I began having problems seeing things and went to my optician.  My optician said that my eyesight was perfect, but my brain was having problems processing what my eyes were seeing – something known as ‘brain blindness’.

In your opinion, what are some improvements that can be made in relation to community awareness about dementia, and particularly surrounding young onset dementia?

Agnes: Design, in my opinion. What is missing when people talk about improvements is the design – thinking about sensory changes.  You must speak to people with dementia. Signage – too much, the wrong information, too many words.

Julie: My own research is focused on the resilience of people living with dementia. Helping people to stay connected, have more control over their circumstances and have the opportunity to make sense of their lives all help to promote resilience and a sense of well-being. Whether this is something practical, such as, better design and way finding support, or making time to talk to people about their lives and what they want.  There is a lot we can do.

What are some of your top pieces of advice for aged care workers to better care for residents who are living with dementia? Are there differing challenges to watch out for compared to at-home carers?

Agnes: Think problem, think sensory, think solution. Read the book! It’s all in there. Just ask the person living with dementia. Be a detective.

Julie: Caring is a skilled job no matter the setting. Good care is built on relationships. This involves taking the time to get to know the person and working at their pace. Realising the importance of individuality, of everyday personal moments and routines. It is often the small things we do that are the most important. Ensuring we take the senses into account is an essential part of this.

Could you provide us with a glimpse of any other current research projects you're working on in this space?

Agnes: I am currently looking at research ethics regarding people with dementia. I am part of a panel, Dementia Enquirers, which has set Gold Standards to help people living with dementia to choose which research projects to be involved with. 

Julie: I’m continuing to work in the resilience space focusing on how care staff can use resilience in their day to day work with people living with dementia. Agnes and I are both advocates of learning about life through our shared experiences and resilience is often a subject we discuss. I admire her greatly for bringing this work to life for so many people.

About the authors

Agnes Houston MBE is a dementia activist who has always put others first. She was diagnosed with younger onset Alzheimer’s disease in 2006 at the age of 57. She has campaigned for best practice and improving the lives of people with dementia (especially those experiencing sensory issues) in Scotland and received a lifetime achievement award from Alzheimer Scotland in 2013. Agnes is former Chair of the Scottish Dementia Working Group and currently Vice Chair of the European Dementia Working Group and a board member of Dementia Alliance International. In 2015 Agnes was awarded an MBE and in 2016 was awarded a Churchill Fellow.

Dr Julie Christie is Service Manager - International at the Dementia Centre, HammondCare, based in the UK. Dr. Christie is a visiting Research Fellow with the University of Edinburgh and an Adjunct Lecturer at the University of New South Wales with a focus on resilience, citizenship, and co-production.  She is a reviewer for the Journal of Research in Nursing, Ageing and Society and Dementia: The International Journal of Research and Practice. Dr Christie is currently the lead for the  Dementia Dog Programme evaluation and the Life Changes Trust funded Dementia Friendly Communities Programme, both in Scotland. She oversees the work of Dementia Support UK: Connect, Consult HammondCare’s UK consultancy service for care homes.  

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