My friend Brigid and I love Autumn. She tells me how she likes the country colours when October comes. So calm it is then. Every year that passes, we love it more and more. We don’t love it because we are in our seventies. No. We have always loved it, even when we were children we looked forward to its arrival.
But we have to agree here that our growing love of Autumn might also be to do with the always-present fact that Brigid has Alzheimer’s and I have vascular dementia. Our love for calm and order comes from our need to avoid confusion.
We meet once a week at a very nice coffee bar where the people are kind to us and we can see the wonderful North Sea. But this time, Brigid and I decided to stay at home for our usual coffee and invited a young friend of ours, who could be our grandson. Lewis Slade is training to be a psychologist, and dementia is one of his interests.
Lewis says he remembers how he met us at Kent Forget Me Nots, a group of people living with dementia who meet, with the help of psychologists, to research and to inform society about the views of people with different dementias.
While pouring his coffee, Brigid asks Lewis why he thinks that people treat people with dementia so badly. “The other day,” she explains, “I went out to lunch with friends. We were quite happy discussing the weather or an article that I had read that morning, and the conversation was friendly and normal. But once I told the person next to me that I had Alzheimer’s, this person stopped talking to me again and avoided making eye contact with me. It was like a big dark screen had come down between us.”
I agree with what Brigid just said. The way people react when you tell them that you have dementia can only be described as bad – at times even cruel and stupid. “For instance, Lewis, imagine you had met Terry Pratchett a few years ago, at the beginning of his Alzheimer’s. You didn’t know he has it and you are enjoying talking to this man of great imagination and kindness. Somebody tells you that he has this disease. Would you stop talking to him? No you wouldn’t, because you are an intelligent and moral person, but a lot of people would, I can assure you, because that is our experience.”
Lewis says that he thinks that may have to do with the stigma surrounding dementia, which comes from a lot of misunderstanding about what it actually is. “And I think,” he says, “partly, a lot of the misunderstanding comes from what you both feel so strongly about, and what you have discussed with me before: the language that’s used to describe it. For example, in medical textbooks, dementia might be described as ‘a chronic or persistent disorder of dementing process marked by memory disorders, personality changes, impaired reasoning…’. It’s not very human is it? And I think that’s one of the things with the way people often talk about dementia, it can be dehumanising. And it can lead to all these misconceptions.”
“Lewis, that is so true!” I say. “But many times I have wondered how to resolve this problem. Because it is a problem isn’t it?”
“There needs to be some kind of agreed language that everyone uses,” Lewis replies. “And there’s been a lot of work recently by people with dementia to try and engage the media in this discussion and to stop using phrases like ‘dementia sufferers’, ‘epidemic ‘ etc. These can be dehumanising and insulting to people living with dementia.”
“I’m a woman living in the 20th and 21st centuries in a democratic Europe, where I always felt equal to anyone around me,” says Brigid. “But lately, I have to say, at times I haven’t seen myself that way. Anything I say doesn’t have the same value as someone not living with dementia. Many times, when talking to people who know I have it, they either ignore or disregard what I’m saying. Even worse, people feel free to lie to me, or about me. My experience” adds Brigid, “is that sometimes, people talk to me as if I weren’t bright enough to understand the least thing they are talking about. Having travelled, lived and studied in different countries, I feel diminished. How can we face such situations, because living with this stigma is not easy?”
“But how can we inform society about this problem?” I ask. “Through the media?”
“I suppose they have been engaging a bit lately” Lewis says. “they have started listening. Whether there is actually change, I think remains to be seen. But yes, they do need to take some responsibility for this, because the press has an incredible amount of power over the opinions that people form.”
It’s time to go. “Dear Lewis, thank you so much for coming to coffee with these two old ladies” I say. We have learned so much talking with you and hope that those who study dementia plus the media listen to the contribution of people who live with the condition and understand how people can feel confused and diminished by the way they are treated. Society should know that the importance of kindness cannot be underestimated.”