Originally published in AJDC October/November 2019 Vol 8 No 5
Agnes Houston and Julie Christie explain the sensory changes that can occur due to dementia and why support for these issues is essential
Coming to terms with a diagnosis of dementia is a life-changing experience. People with dementia have to adjust to a new way of life, changing circumstances and changing relationships. However, although the person might be aware of changes to memory and the impact that this can have (from remembering a name or knowing where you are), many people are unaware of the possible sensory changes they can encounter.
Sensory changes and dementia
So, what are some of these changes? Taking each of the senses in turn, a person with dementia may have vision difficulties because of changes to their sight resulting from ageing or another health condition. Having dementia may add to the challenge of living with these sight changes. Or the person’s eye may be healthy but the brain has trouble interpreting what is seen due to the impact of dementia. With regard to hearing, hearing impairments and dementia increase in prevalence as people age, meaning that the person may have the challenge of age-related hearing loss as well.
Taste and smell are senses we rely on for a range of daily activities and enjoyment, for example at mealtimes, and they help to keep us safe too. When these senses change due to ageing and dementia we need to have strategies to adapt, reduce the distress that can be caused and in some cases to prevent harm. This also applies to touch. Living with dementia can change the experience of touch, which is an essential part of the care experience. Position Sense (clinically known as proprioception) and balance can be impacted, affecting movement, navigation and walking. Our ears are also essential to balance and movement, although we don’t automatically think about this.
My name is Agnes Houston. I am a dementia activist who was diagnosed with younger onset dementia, of the Alzheimer 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. Sadly, I found it to be a negative experience which was all about loss. There was no attention paid to my sensory challenges, no rehabilitation programs and no counselling. Basically no hope. I felt as if my care was out of my hands and I couldn’t understand the changes to my vision and hearing.
I consulted my optician who knew little about dementia. My GP team knew little about the sensory changes 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 and left to my own devices. Surely I was not the only one having these sensory changes? So instead, I chose to be hopeful and to go on a quest for knowledge to understand what was happening to me.
It turned out that I wasn’t alone, and person after person shared their experiences of noise sensitivity, agitation and feeling helpless, all due to sensory distortion and sensory overload – the impact of which is to disable and isolate people living with dementia when we can avoid this.
In 2016, I obtained a Churchill Fellowship to travel to other countries to learn more. My findings confirmed the need for a book on sensory changes. Together with my writing partner, Dr Julie Christie, and the support of HammondCare, I have now written the book, Talking Sense: Living With Sensory Changes and Dementia, that I would love to have been able to read when I was diagnosed with dementia.
In each section of the book we briefly describe each sense, the impact of ageing and the impact of dementia. There then follows a section looking at the sensory problems that can occur. We cover the implications of environmental design and interior finishes, with some tips on self-management for the person with dementia, and advice for families and care partners. There is a references section and some suggestions for further reading and useful links.
Throughout the book we include the experiences of people living with dementia. At the end of each chapter we provide details on who to contact and where you might find sources of help. We signpost the reader to links throughout the book. This is the first edition of this book and we welcome stories and suggestions for the second edition.
The right support at the right time
It is important for all of us concerned about dementia to understand the biological changes of ageing and the perceptual problems of dementia and to understand how these challenges interact and together can affect the person with dementia. Sources of support and signposting are essential. We need to know about ageing, the senses and dementia and not look at each in isolation. I want people with dementia and their care partners to have the right support at the right time.
Dementia, once considered the knowledge domain of doctors and nurses, is now being understood from the perspectives of people living with the condition. For example, in Talking Sense we share the story of Phillip, a farmer who was comforted through innovative use of touch by hospital staff. For me, proactively seeking help for my visual impairment has opened up a new world of support, understanding and a new peer network, not to mention practical help and access to aids and equipment.
The experience of dementia and the quality of the places and spaces in which we live are intertwined. Dementia can mean a heightened sensitivity to the built and social environment. The more that we understand ourselves and the ways in which we can modify our environments, or take positive actions, the better prepared we can be for what might come. Professionals who work in this area are crucial points of navigation in this process.
We hope this publication is merely a stepping stone in this important area of work and that this book will inspire others. It is vital that this topic is included in education on dementia. Research on dementia must also begin to address this important area of work. Most of all, we want to ensure that no-one faces these issues on their own or feels that they are isolated because of these difficulties. We encourage you to speak out and seek the help and assistance you need: ‘Think dementia; think sensory challenges; think solutions’.
Talking Sense: Living With Sensory Changes and Dementia (HammondCare 2018) is available for free download from http://bit.ly/TalkingSense
Agnes Houston (left) MBE is a dementia activist who was diagnosed with younger onset Alzheimer’s disease in 2006 at the age of 57. She is former Chair of the Scottish Dementia Working Group and former Vice-Chair of the European Dementia Working Group, a board member of Dementia Alliance International, a Knowledge Exchange Associate with HammondCare and a Knowledge Exchange Fellow with the Edinburgh Centre for Research on the Experience of Dementia (ECRED); Dr Julie Christie is Dementia Centre Service Manager in the UK, Adjunct Lecturer at UNSW and a Visiting Research Fellow, University of Edinburgh