The biggest obstacle to dementia? People’s attitude. That’s what Dementia Without Walls, a new report from the Joseph Rowntree Foundation (out of the UK), says.
Changing perceptions about people with dementia was the focus of the report, along with exploring what features make cities dementia-friendly. The Foundation’s work caught the eye of Peter Jones, a retired architect recently diagnosed with early-onset dementia.
In this article from The Guardian, Jones shares his own personal experiences in poignant, often heartbreaking terms, and the reasons why he is grateful for the report and its essential goals.
He writes of his life post-diagnosis, “No one can understand what it’s like to have dementia unless they’ve got it. I would never have believed how complicated life could be. I don’t want people to tap me on the back and say ‘there-there.’ I don’t want special arrangements that will affect other people’s lives. I just want to be ‘dad’ or ‘grandad.’ I just want to carry on as near to normal as I used to.”
Jones also admonishes people to think before they attempt to empathize with a person who has dementia or Alzheimer’s (saying something like “Oh, I’m so forgetful too.”). They need to “realize there’s a fine line between the silly things that everyone does and the things that I do because of my dementia,” says Jones.
It is so important that people like Jones speak up and share their perspectives, share what life is like from their point of view. We need to hear more of it, and we need to do more than hear it. We need to do something about it.
I love these goals from the Joseph Rowntree Foundation’s home page, and I hope we can follow the lead of our partners across the pond as we seek to support, not isolate, those living in the merciless grip of dementia:
- Challenging attitudes, understanding and behaviours.
- Inspiring local communities to be more aware and understanding of dementia.
- Supporting the collective engagement of people with dementia.
Keep these words from Peter Jones in mind as you go through each day, undoubtedly encountering people with dementia though you may not even know you are: “It’s a cruel thing that people can’t tell that I’ve got dementia just from looking at me. They can’t see a big bump on my face so they can’t tell there’s something not right. They can only see what I do and say. In the early days I didn’t want people to know, but now I tell people if they need to know. When I’m outside my circle of family and friends, the biggest obstacle is people’s attitudes. I’m not worried about people’s reactions, that’s their problem not mine. I’ve got enough problems of my own. I can laugh about it now, but it’s hard.”
Let’s get to work, for the Peter Joneses and their caregivers who are all around us, in our families and communities. What first step will you take today?