Q&A: Dementia expert John Zeisel on 'hopeful aging'

Zeisel has written a book, hosted a TV special and even founded a company to address the way we view people with dementia. He spoke with us about helping the brain age gracefully.
Written by Molly Petrilla, Contributing Writer

As the founder of Hearthstone Alzheimer Care and the author of I'm Still Here: A New Philosophy in Alzheimer's Care, John Zeisel is well-versed on the aging brain. He's also a longtime proponent of treating dementia without pharmaceuticals. Instead, he's developed a host of unique approaches to making life better for those with age-related dementias -- and as it turns out, the arts and creativity are key.

A sociologist and the host of a recent PBS special titled Hopeful Aging, Zeisel spoke with us about how people can help their brains age gracefully, the biggest misconceptions surrounding dementia, and what exactly "hopeful aging" means.

Let's start with the basics: What is the brain's central role in our lives as we age?

The brain's central role in our lives from the day we're born until the day we die is to figure things out. Our brains are made to be creative. That's the main reason we exist. Creative means discovery, creative means learning, creative means invention, creative means comprehension. We're always in search of understanding.

Speaking of understanding, what do we need to understand about the brain to keep it working as well as it can?

The first thing we have to understand is that the brain needs meaningful sustenance. You can't learn, be innovative, discover, be creative with banality. Playing bingo isn't going to cut it. It's not interesting enough. Looking at a Matisse and saying, What is this painting about? -- that's interesting enough.

What about puzzles and brain teasers?

Sudoku, crossword puzzles -- mental exercise is not what I'm talking about. It doesn't do it. The term that's used for those is 'cognitive stimulation.' You don't need cognitive stimulation. You have to have meaning in your life. If it's meaningful, it will stimulate you. The meaning is the energy. The meaning is the gas in the car.

Is there anything else we can do to help our brains age well?

The basic three are sleep, diet and exercise. All of our organs are connected and we know that the best thing for every one of our organs, including our brain, is to sleep enough, exercise and manage what we put in bodies. The research is showing it’s good for the brain and that it’s connected to reducing Alzheimer's.

The second level of intervention is stress reduction and creative endeavors: the arts, learning. The learning can be anything. It can be based on aptitudes and skills you already have, or you can also learn new skills. All kinds of learning are as essential as stress reduction.

So if someone does all that, how much can it help ward off Alzheimer's disease and other dementias?

I don't know. Nobody knows. But the point is if you are doing those things, when you cognitively decline, you're going to have a better life. Forget about warding it off. It's not going to work. Yes, it's going to help a little bit, but the measure that we have to start using is not, How do I avoid dementia? It's, How do I live a good life with or without dementia?

What about people who already have dementia? Can learning new skills help them, too?

The biggest misconception is that people with dementia can't learn. There are four learning systems in the brain. One is called episodic learning: there's an event in my life and I remember what happened. The second is semantic learning, like learning a word out of context. Then there's emotional learning, which revolves around relating to others. Then the final one is procedural learning, which we learn by repetition, by doing something. It's how you learn to ride a bike or sign your signature.

People with dementia lose some ability with the first two, but they do not lose their abilities for emotional and procedural learning. The thing is, in our society, we tend to value semantic and episodic learning more than procedural and emotional learning. Intelligence Quotient was developed long before Emotional Quotient was uncovered. But it turns out that the success of people in any job has more to do with their EQ than their IQ. If we value emotional and procedural learning -- which we actually do, but just don't know it -- then we start seeing what people with dementia can do, not what they can't do.

When it comes to learning, you have to give the brain its own hand, whether you have dementia or not. We have a school for people with dementia based on Montessori principles and the I'm Still Here approach. The students decide as a group what they want to learn. They choose their meaningful activity and we organize it to allow them to learn, to explore, to discuss with each other and to allow the brain's natural inventiveness to take off. You have to follow them, not lead them.

Tell me about why you so strongly encourage the arts for people with dementia.

People with dementia really grasp the arts: music, dance, visual arts, drama. They get it because all of the arts communicate emotionally. Whatever level of complexity there is in an art form, the artist brings it together and gives it some cohesion, which reduces the complexity that the person [with dementia] is dealing with. All of the arts -- even drama, where you have words -- can be understood non-verbally. And all of the arts in some form or another relate to procedural learning and procedural memories.

Building on that, our program which I call 'It Takes a Village,' suggests that the whole 'village' should set up organizations and settings open to people with dementia where there are trained people who know how to handle them and dementia-capable programs, meaningful to the person, based in the arts: movie theaters, museums, parks, cafes, ball games, the symphony, the ballet, schools, theaters, farmers markets, the local bookstore, the public library, restaurants, the circus. All of these are places that people with dementia know what it means when you mention going there. If you have arts programs in these places run by people who know how to manage dementia, you now have a 'village' open to people with dementia, and they have their human rights.

Your recent PBS special was called Hopeful Aging. How do you define that term, and why is it important?

Up until today, dementia has been defined as unhealthy aging, as 'sick' aging. This puts 50 percent of people over age 85, 25 percent of people over 75 and five percent of people over 65 in a group that is considered abnormal, unhealthy and unsuccessful. So we're condemning this large number of people who have dementia or cognitive decline as sub-human, in a sense. Given the high percentage of people who develop dementia as we age, we're basically saying we all have no hope. Without hope, we don't have a life worth living because it becomes hopeless.

'Hopeful aging' is an approach based on the idea that whether you have a dementia or not, whether you have cognitive decline or not, we can have hope, we can have a quality of life and we can have a life worth living.

Have cases of dementia been on the rise recently?

Over history [the prevalence] has been the same. The difference is we're living longer now because we have good healthcare. The older people get, the more dementia there is in society.

The other thing is you now have organizations that want to raise money for pharmaceutical research. As a result, everybody's talking about dementia. Whenever you talk about something more and more, people say, 'Yup, I have it.' They called my grandfather 'senile' and he had a nice quiet life. He hung out around the house and went to the park. Today they'd say, 'Oh, he has dementia. What are we going to do with him?'

You mentioned pharmaceutical research. From what I've read, you're not a fan of treating dementia with pharmaceuticals.

Almost everyone agrees that the medicines presently available have hit a wall and they don't even help symptoms very much. They might delay some of the symptoms for a few months, but there can be side effects. While there's a great deal of funding being done in pharmaceutical research, most of the experts now say we may, in 10 years, have something that slightly slows down the progress, which means there would be many more people with early-stage dementia in 20 years than there are now. We have to have societal change.

Similar to what you were saying earlier about dementia-friendly cities and towns?

Right. We have to understand that people with dementia deserve to be part of society, that they deserve to be part of the hopeful aging group. There are five million people with age-related dementias in this country today, five million in Europe and almost 10 million in China. These people are being denied their rights to be part of society because society has counted them out. Society says they don't exist, they can't manage it and they don't deserve to be part of what we're doing. The first change is to embrace the idea that people with dementia are human beings and deserve their human rights to participate in society with dignity and care and self-fulfillment.

This post was originally published on Smartplanet.com

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