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Hop on board the communication train
by Martha Pusey
People have been communicating since the dawn of time and styles and languages have adapted over the years. However, for some people with dementia, communicating can become more difficult. We have all experienced that moment where a word is on the tip of our tongue or we call someone the wrong name. That does not mean that we have memory issues, but for some people living with dementia, the reality of losing words or muddling them in sentences can become a real frustration. Carers too can find it difficult to interpret what their loved ones are trying to communicate.
For some creative writing is one means of communication and comes easily, one of my colleagues writes poems* and books which she has had published. She says that writing is a way of helping her deal with difficult situations in her life and she finds putting pen to paper very cathartic. I, on the other hand, have had to write in various styles in my lifetime, from essays to reports and now taking up the challenge of blogging and have never used writing as a way of expressing myself.
*Please see our facebook page to hear some poetry written by a member of staff and read by our volunteers
A Train of Thoughts
Learning to communicate is one of the earliest things we all learn, talking, reading, and writing are fundamental to most of our lives. For some people living with dementia however, the reality of forgetting words, getting words muddled up can cause immense frustration. Some people become creative and adapt their styles of communication to cover up when they mix up words or make a joke of it to start with. In truth it can be extremely frustrating, upsetting or worrying for the person with dementia and over time they may demonstrate these feelings in different ways, including becoming withdrawn or having outbursts of anger.
I once had it explained to me by a gentleman living with dementia that he felt his brain was like Clapham Junction train station. He described his thoughts like the trains that pulled into the station and within seconds they were gone again, leaving him wondering what he was thinking about. He was also finding getting anywhere near the platform to board a train increasingly difficult as he contended with the bustle of the station, people around him talking and chattering on (his family), whilst others asked questions about platforms and train times as he really tried to focus on his own thoughts.
For me that understanding of how he felt was invaluable. In turn I was able to share that with his family when they told me he was becoming withdrawn and not communicating with them enabling me to offer them support on giving him time to listen, process and respond.
Additionally, concentration levels for someone with dementia can become limited and remaining focused on a conversation, reading or writing can become difficult. For other people, having dementia means they can no longer read as the words become mixed up on the page or the brain connections are sending the wrong signals. The frustration of trying to read and not being able to, makes people living with dementia totally fed up, often to the point that they give up trying and then lose the skills they learnt as children. Reading and writing is like all that we have learnt – if we do not continue to practice them, they can become lost.
With the complexities of the caring role, communication can become more difficult and I have seen carers get angry or upset because their loved one with dementia calls them the wrong name or asks for their parents. It is a natural response to want to correct someone when they are wrong. That said, I urge carers to stop and ask themselves, “How important is it to correct their loved one?” and instead “Live in their world” and find ways to re connect and create conversations. Our December blog about Sundowning will address this in more detail and our website has some printable material about ways to create conversations with people.
The Sage House Daybreaks team use word games as a way to support the use of language and enable the retention of these skills. Word wheels** and word scramble** are two of my favourites and can be played in several different ways. Even childhood games like scrabble is a great way of spending quality time with a loved one and supporting them to maintain their language skills.
Creative writing with people with dementia can be a good group activity, it means that everyone can contribute to a piece of writing and it can be achieved through a reminiscence session or discussion. I have in the past supported groups to write poems and short stories by bringing in flowers, leaves or other items from the garden. Everyone is given the opportunity to talk about an item, describe the colour, the smell, how it makes them feel or if they have a memory associated – often evoking memories of flowers they had at their wedding or plants they grew in their garden. The most recent creative writing piece session I supported was for ‘National be a pirate day’ and the day was planned with choosing our pirate names, singing sea shanties and reading a short story about pirates. This led into a discussion about what our pirate characters might do if we were onboard a pirate ship. Starting out by choosing words to describe pirates and their behaviours we then began to rhyme words and the group produced ‘The Pirates of Sage’***
Communication is a skill that we all learn however, for people living with dementia this can become difficult and frustrating as words become muddled and they lose the concentration to be part of conversations. This doesn’t mean that we should ever stop trying and it is up to us, the family and paid carers to find creative ways to enable those conversations. To celebrate National Poetry Day on 1st October Dementia Support wants you to enjoy some poems read them here or listen to them read by our wonderful volunteers so head over to our Facebook page. Who knows it might inspire you to pen a verse or two that you can share and post on our Facebook page?