Dementia

What did she say? Why we have to introduce ourselves every time we talk to a person with dementia.

Simple adjustments in practice will have the biggest impacts on outcomes when we deliver support to people who have dementia. The challenge for us all is understanding the issues faced by the person from their viewpoint and then having honesty when continually reflecting on our own individual practice. Sometimes the hardest thing we do is admitting that sometimes we just 'get it wrong' and for this reason detrimental practice becomes embedded into future care practices. One of the biggest demonstrations of this is that support givers rarely introduce themselves to people who have dementia. The first and probably most important sentence that I was introduced to when I first started my journey of understanding dementia was:

"The way you approach a person with dementia, instantly determines how they will respond to you."

So lets ask some simple questions: Do you believe that residents with dementia know who you are? Do residents touch your face when you speak to them? When you walk away sometimes you will hear " What did she say?". Have you heard someone with dementia call their son by their husbands name or husbands by their sons?

These are actually quite common things when speaking to staff who support within a dementia specific care environment. Human nature means that we automatically believe that if we spend time with a person, they know who we are. I have asked hundreds of care staff why they do not introduce themselves when approaching a person with dementia and the most common response is "My residents know who I am". So this response is all about perception and not truly understanding dementia from the persons point of view, facial agnosia or short term memory loss. I have proved hundreds of times that residents who are 'mid-stage' dementia just do not know who you are and that there is a total misconception within care providers. I have sat that person in front of the resident that they think knows who they are and have asked " hello, what is my name? In then watch as the person tries to focus on the person and either says " I don't know" or calls them by a different name. This isn't a one time response, but happens again and again and again.

We then look at what a person with dementia is communicating when they touch you on the face (just like a person who is blind). Support staff tell me that they have experienced this and they feel it is affection. In some circumstances this may well be, but this behaviour is seen across different care settings, at different times and for multiple people, so is this affection? No this is the person trying to work out who you are, because they do not know who you are.

One of the most interesting communications is when a person with says "what did she say?" "what did she want?" when you walk away from the person you support. It is so common but rarely registers with the care giver and not really given any attention to understand it. This is a communication that I listen out for and hear so many times, just like when a person calls their son by a different name etc. This response is the persons thoughts coming out of their mouth and they do not realise it is happening. If the person was speaking to you, they would say "what do you want? "What did you say?", However they are now speaking as if you are not there and as using your gender rather then name. This is such a huge communication to say they do not know who you are and short term memory loss means that they do not remember what you wanted.

We need to teach our staff, families, visitors and anyone who comes into direct contact with a person mid-stage dementia onwards, that they must introduce themselves everytime they approach the person. We may currently say our names 5 maybe 10 times, however we should be saying our name constantly throughout the support we give. We should even teach families that they should be constantly introducing themselves even though this may seem alien to them.

So why is this happening? Facial Agnosia is a massively under taught condition that the majority of people who enter mid stages of dementia will experience. There are other forms of agnosia such as environmental Agnosia and this is the loss of ability to recognise environments. Facial Agnosia is when the person loses the ability to recognise facial features and this is why they will start to touch your face and so on. We have to train staff to understand agnosia otherwise we are failing before we start. How would you like to receive personal care from a person you do not know? Would you like to be supported in food intake by a stranger? Would you like to live in a communal living environment where the people are faceless, mirrors everywhere and you do not even recognise the reflection in the mirror?

Introduce, then introduce again and then again and again. It is not patronising and it is not unusual and strange, it is needed, it is wanted and it will change that persons day.

Author: Glenn Knight, Founder of the Dementia Dictionary