Joan Jackman is a former carer of her husband who had younger onset dementia. Joan challenges us to have a deeper understanding of the experience of a person with dementia. In particular, how changes in language and perception can affect how a person communicates. Joan stresses that we should never lose our respect and understanding that the person is still there.
A research speech pathologist recently interviewed me as part of research around communication, perceptual dysfunction and stigma for people with dementia and their carer. People with dementia were also interviewed.
In exploring these issues, I revisited some of the many changes in capacity for communication, which my husband had experienced as part of his dementia. Formerly a colourful story-teller who was socially engaging, as well as being an avid non-fiction reader, the progressive impact of dementia on his language comprehension and expression from the very early stages of his condition made a huge difference to his capacity to engage in the many word-related activities he previously enjoyed.
Additionally, changes in his perceptual abilities also had a direct impact on my husband’s ability to engage in a competent, confident, self-reliant way with his environment. Formerly an independent, active, versatile man, my husband experienced changes in his ability to execute movements accurately, such as judge the depth of steps, use a telephone, work out money, use kitchen appliances, work through tasks which required several progressive steps, and sadly to write and draw – a favourite pastime.
What was important through the research exchange was to identify and include changes in language (understanding and expression) and changes in perception (interpreting and responding accurately to information). These are integral parts of changes in ability commonly experienced by people with dementia.
These changes are often misunderstood or missed altogether by friends, family and health professionals. Yet these abilities are part of the foundation of what makes us who we are. The research exchange was an important reminder to understand and respect the person for who they are.
Who a person is never changes. This was the fundamental understanding and acceptance by neuroscientist Lisa Genova, which was gained from interviewing people with dementia for her book: Still Alice. The word used by people interviewed was “still.” I still love to … I still go to … I still need … I still want … hence the title, to which everyone with dementia may relate: Still Alice.
There is so much for us to continue to learn and understand from people with dementia. More research and awareness is needed.