You're sitting outside a café with a friend enjoying a great cup of coffee on a beautiful day. When you glance up the sidewalk, you see an elderly man with a disheveled appearance heading your way. He's looking around, as though he's lost or confused. Your impulse is to help, but how?
A colleague is recounting what happened at her last meeting, telling a particularly funny story as you approach he office door. But she suddenly stops, office key in hand, and stares at the door. She looks down at her key but doesn't make a move. Do you wait or offer to unlock the door?
In the first case you might not know the person has a form of dementia; in the second you may know about your colleague's recent diagnosis of Alzheimer's disease. How you handle either situation is the same, says Kenneth Kosik, co-director of the Neuroscience Research Institute at University of California, Santa Barbara. Kosik, who has studied the brain and various forms of dementia for over 30 years, has some suggestions for how to improve interactions with people with dementia.
Calm is best
Different forms of dementia have different symptoms, such as memory loss, impulsive behaviors or personality change. Any of these changes can result in frustration, anger and strong emotions for both the patient and caregivers. The brain simply doesn't function in what most people consider a normal way, and for the person who can't remember how to unlock a door it can be very upsetting. So the most important thing to do is to help the person calm down.
That doesn't always happen in a logical way, Kosik says. People with dementia can't always follow rational thoughts. That's why it's necessary to find out what the individual is trying to accomplish – such as going someplace or finding someone – and then respond in a reassuring manner. And you don't always have to correct them. If your mother-in-law is concerned about the purple-green kangaroo in the room, then just talk to her about it.
"It's far better to keep the person calm," Kosik says. "I don't know what the problem might be to play into a person's delusion if it's not destructive or harmful to the person or anyone else."
He likens it to playing with children. The dolls have names, even elaborate life stories. Sometimes children make up imaginary friends who live in the house with them and everyone plays along, even enjoying the game. The creativity is a means to help settle agitation.
"Some types of dementia reflect a release of our creativity and imagination that is kept suppressed because the front part of the brain – the self-monitoring part of the brain – keeps a lid on things. There's a certain way to behave, people have certain expectations of us. Therefore we have to fall into line. When the frontal part of the brain becomes impaired, sometimes some of these more imaginative and creative things happen that aren't destructive in any way."
Step into their shoes
Focusing on the person in distress, and seeing their perspective, is the best way to choose how to respond. But that can be difficult when the idea of how someone is supposed to behave interferes. It's necessary to suspend those ideas in order to consider positive responses, Kosik says.
In the case of Alzheimer's, the most common form of dementia, memory and learning abilities particularly take a hit. Damage to brain areas critical to processing and forming memories, such as the hippocampus, impairs a person ability to recall certain memories and skills or learn new information. Symptoms can very from person to person—an individual might still be able to remember how to play tennis or a musical instrument but not remember how to unlock a door with a key.
"Many people feel they might want to try to teach (the person) to regain those skills, and that's a mistake," Kosik says. "It's much better that, if you can recognize when a skill is lost, to simply help them and do it for them. Otherwise you're going to encounter a huge amount of frustration."
In such situations it's better to first ask and offer to help, rather than forcing a solution, which can undo the calm and escalate to anger and conflict.
Another form of dementia is called frontotemporal dementia or FTD, which often strikes in late middle age and affects the frontal and temporal lobes of the brain. Often, memory is not as affected as in Alzheimer's, but a person's behavior and personality changes. Some people with FTD have been known to suddenly show a creative and artistic awakening, creating work that hints at savant abilities. These individuals may also display rigid or erratic mannerisms. This reminds Kosik of a scene from the movie Rain Main in which the autistic character played by Dustin Hoffman is very specific about the syrup needing to be on the table before the pancakes. If you know the person well enough, you might be able to distract him by pointing out something else that will be interesting and will catch his attention. It might not work, but it's one way to help calm the person and shift his focus, setting up the conditions to address what he needs.
Compassion is essential
"When a person has an impairment, it's very concerning and you do have to look out for them," Kosik says. "If a person can't walk, you get them a wheelchair. If the person can't see, you get them a seeing-eye dog. If there are other inabilities that have to do with cognition, you help them."
This isn't about making judgments or getting someone back in line. It's about recognizing the very real difficulties people with dementia face. Kosik warns against "glossing over" these difficult situations when they arise. The underlying medical condition needs to be acknowledged and addressed, especially when there's a potential for harm. But, he says, accommodating the needs of this person is the same as accommodating those of someone who doesn't have dementia. Just as you would unlock the door for a man with his arms loaded down with groceries, you can do the same for someone who has forgotten the connection between a lock and a key.
Recognizing the concerns of person and the circumstances takes some effort. It means thinking differently in order to gain a better understanding.
A person with memory loss and cognitive impairment might think the radio playing in another room is an intruder trying to get into the house. To understand that perception you have to suspend what's obvious to you – it's a news program – and consider that this person doesn't know where the voices are coming from.
Kosik says making the effort to understand how a person might mistake a fireplace for a toilet will help keeping interactions as positive as possible. "Try to see the world through their eyes," he says.