For many years now we have had various forms of aging and dementia “sensitivity” programs. The intent of these programs has been to create awareness of the experience of aging and/or dementia, and perhaps, to foster empathy for challenges experienced by people who are growing older or growing with dementia. For aging, these programs have often included glasses smeared with Vaseline to demonstrate how an older person might see the world with glaucoma or macular degeneration. For people with dementia, it might be a simulation of sensory changes such as voices heard through headphones.
I believe these programs have been well-intentioned. And, perhaps, they have placed on the social radar the need to have awareness of the experience of aging and dementia. Yet, I would like to ask us to stretch our minds a little more.
A great blog by Ashton Applewhite in 2016 addressed these programs by asking, “What do they actually teach?” In the blog she and others pointed out concerns about these programs teaching stereotypes about aging, focused primarily on the negative, as well as neglecting the individual experiences of growing older and growing with dementia. Ashton expressed her concerns that, although these programs create awareness, and teach a story of aging, it is not necessarily a vision of aging that is accurate, universal, or even helpful. It could actually be damaging.
I agree. I would like to pick up this topic, from my own voice, and carry these concerns a step further, as well as offer some alternative possibilities.
I would add the concern that sensitivity programs can contribute to our feeling that older people or people with dementia are different than us – “those people”. It is “those people” who have these challenges like cataracts, macular degeneration, or cognitive changes, not us. Meanwhile, any one of us can and do have these challenges. It sort of feels like we are outside looking in, which doesn’t feel very sensitive. So, here is a question:
Doesn’t it strike you as strange that we need to create simulations of aging and dementia when we indeed have real people with dementia and people who are growing older who we can ask about their experiences?
I mean, do we NEED to simulate aging and dementia?
I have an alternative.
Let’s talk to people who are growing older and growing with dementia. Let’s see them. Ask them about their experiences. Have experiences with them.
I need to confess that I am saying all this as someone who created aging sensitivity programs, earlier in my career. That’s right. I had good intentions. I thought it would help people be interested in aging. Maybe it helped. But then I started thinking differently about it. And I feel that I have to share how this change of heart and mind happened. Because we always, always, always have to keep challenging ourselves to listen and do better. I am willing to share my journey – perhaps if we are more open with the lessons we have learned, we can all view change without judgment.
So, what has made me change my mind?
It has been the voices of the many people growing older and growing with dementia who have shared with me their experiences. People who live some of these difficulties we have in sensitivity programs, and people who don’t. People who have physical and cognitive challenges, and yet, that is not what they are all about. People who have surprised me with who they are. People who have given me different perspectives about what it means to them about growing older or living with dementia.
This made me realize that we cannot neatly explain the human experience of a group of people through a few characteristics that may or may not apply to all of them, and if it does apply, looks different for each person.
Think about it. If I were to gather together a group of my middle-aged friends, and then try to create a sensitivity program on what it was like to be middle-aged, what would that even look like?
It would be tough, as we are all individuals. And it would probably be offensive to be reduced to a few characteristics that seemingly attempt to describe MY experience.
Alright, let’s say we all start talking to people growing older and growing with dementia to try to understand their experiences, what they are all about, what is important to them, etc. Will this tell us what IT IS LIKE TO GROW OLD, as in, THE ANSWER about what aging or dementia is like?
No, because that’s the point. Each one of us is an individual, and the experience of growing older is unique to each of us, even if we share some challenges of growing older, like cataracts, or arthritis, or dementia. Or even if we share gifts of growing older or growing with dementia. These shared experiences might not look or feel the same for everyone.
Should we keep talking to each other? Yes.
Because this is what really fosters empathy – being curious about each other.