Even people with an early diagnosis can walk away from hearing that news, tell friends and family and find that instantly an assumption is made about their ability to make choices in their life. Someone with a diagnosis of dementia is still the same person that they were before they were diagnosed, and with the right care and therapies will hopefully remain that way for the longest possible time.
Much of society assumes that someone with more advanced dementia cannot express themselves if they are unable to coherently articulate, but that simply isn’t true. Speech is only one form of communication; assessing body language, the choices being made, positive or negative reactions and different behaviours can often tell us a great deal without a single word being uttered.
Is the person’s body language defensive or welcoming, are they consistently choosing to reach for a particular food or drink over something else, or showing a preference for a particular colour of clothing. How do they react to moving to a different environment (like going outside), what gives them pleasure (anything from favourite music to a warm hug or having their hand held) and what causes distress? What can you do that engages their attention, and keeps it, and what do they appear ambivalent towards?
Playing your part in helping to stimulate expression is very important. If someone with dementia cannot hold a conversation, can they express themselves through music, writing or drawing? However messy what they present to you may be, does it tell you something about how they are feeling? What about sexual expression – many people feel very uncomfortable with the idea that someone with dementia may have sexual thoughts or needs, but they are still a human being. Are they trying to express a need to be loved?
A popular phrase to describe someone with advanced dementia is ‘unresponsive’. In my view it is a description that says more about the abilities of the person using it than the person with dementia. No one is ever 'unresponsive'. You may have to work a bit harder to find something that creates a reaction, but even someone with very advanced dementia is capable of expressing themselves in their own unique way if they are stimulated to do that, and the person enabling that stimulation then has the ability to interpret the resulting expression.
During the last few years of my father’s dementia, he lost his ability to contribute to a conversation and would often appear ‘unresponsive’ to questions or activities around him. Although he was able to say occasional words, his expression came mostly through song lyrics, facial expressions, eye contact, hand gestures, clear enthusiasm for some things (like going outside) and a clear dislike of other things (like having his temperature taken in his ear). He had what I would describe as his ‘blissed-out’ expression, when it seemed as if all was well in his world and he was utterly contented and happy.
As a family we became experts in interpreting dad’s expressions, and because of that we were able to help the professionals caring for him, especially during the times when he was in hospital and surrounded by people who knew very little about him and his reactions. Busy environments, like hospitals, are places where the delicate, intricate way in which someone with advanced dementia expresses themselves can so easily be lost, which not only puts the patient at a disadvantage but also leaves those caring for them in the dark.
As a society I think we have become so heavily reliant on speech as a means of communication (because it suits our need for instantaneous information that is delivered quickly), we are in danger of losing the art of interpreting the needs of anyone for whom speech does not come easily, coherently, or in some cases, exist at all. Without the ability to interpret non-verbal expressions, and in the case of someone with dementia, ally that with everything you know about the person, their likes and dislikes, history etc, you can easily believe that someone is 'unresponsive' when in actual fact they are desperately trying to tell you something.
Even in dad’s final days, he still showed flickers of expression, which only proves how much the human spirit wants to exercise the right of choice right up until the end of life. During that time, dad’s expressions were stimulated by hearing favourite music, comforting words we were reading from books or personal things we were saying to him. At such a sensitive time, seeing his small but hugely significant expressions gave us comfort that dad’s end of life was something that was peaceful and as he wanted it to be.
From the very beginning of someone’s dementia to the end, everyone involved in their care should be putting the person with dementia ahead of their personal opinions or ideas, and that is never more important than when it comes to how that person expresses themselves. It can be easy to ignore an expression that isn’t clearly spoken, but the price paid can be huge in terms of emotional, physical and mental distress to someone who is already vulnerable, often frustrated, and ultimately looking for understanding, appreciation and love.
Beth, your blog is encouraging and for those of us with that jouney ahead, it help so much to hear a positive experience
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