What is Dementia?
A few days ago I was chatting with my mother. She was amazed that Christmas had been and gone and that we were now into the new year. "I think I must have overslept and missed it," she said. In many ways, my mum is typical of our image of people living with dementia: elderly and frail, living in a nursing home, confused about dates and events.
The following day I went on a long walk with my partner in the mountains of South Wales near our home. We climbed rocky slopes, scrambled down steep inclines and generally laughed and chatted about the year gone by and the year to come. Nothing about the day fitted the typical image of someone living with dementia, and yet my partner is.
Over 900,000 people in the UK live with some form of dementia. Behind the statistics are our family members, our friends, our colleagues, our customers. 70,800 people in the UK are diagnosed before the age of 65. They have careers, hobbies, family and caring responsibilities of their own. Despite that, it's an area that is often missed out from information on accessibility guidelines.
Over the coming weeks, I'll be talking more about my dementia-friendly writing, editing and translation services.
For today, we'll start with a short and very basic background introduction*:
1. What is dementia?
The term 'dementia' is used to describe a variety of diseases that affect the brain. Dementia is caused when some of a person's brain cells are damaged and stop functioning as they normally would. For example, in Alzheimer's Disease, the hippocampus is often affected first, making it harder to create new memories or learn new information. In Dementia with Lewy bodies, on the other hand, the cerebral cortex, limbic system and brain stem can be affected, often causing problems with vision and attention.
2. Types of dementia
When we think of dementia, we often think immediately of Alzheimer's Disease, which is the most commonly diagnosed form of dementia in the UK. There are other kinds of dementia, with various effects and symptoms. In fact, 'dementia' is a generic, umbrella term for a number of different conditions. Among these are:
Alzheimer's Disease
Vascular Dementia
Frontotemporal dementia
Dementia with Lewy bodies
3. Problems that dementia can cause
We often assume that dementia is about memory loss, but there are many other symptoms that someone living with dementia has to manage. These can include:
difficulty in processing information
finding it hard to concentrate
communication - speech, understanding language
fluctuating mood and emotions
changed perceptions and visual disturbance
confusion.
Providing good written information to people living with dementia needs to take the above challenges into account. Once someone starts to experience symptoms like these, it can become much harder to focus on a written document and to process and remember the information it contains. How a document is structured, laid out, designed and written can drastically help and that's what I'll be writing about in coming weeks.
"When you have met one person living with dementia, you have met one person living with dementia", I was told recently. The way types of dementia affect individuals and the symptoms they can cause, vary greatly from person to person. There's no "one size fits all" solution, but there are principles that we can use to help make our writing more accessible for everyone.
Next week I'll be talking about Dementia-friendly writing and why we need it. See you then!
* Although I've been supporting family members with dementia for many years, I'm not a medical professional. The above provides some basic information as background. For more information about dementia in general, there are lots of excellent sources on the internet. In the UK, the Alzheimer's Society and Dementia UK provide good factsheets. Many other countries have similar organizations in various languages. If you are worried about yourself or someone you know, it's always a good idea to have a chat with your GP/family doctor.
