Imagine yourself in the place of the person with dementia.
We are who we are because of what we learn and what we remember. Who am I, then, if my memory is impaired?
Nobel Prize-winning Neuroscientist
When you are working with a person who has dementia, think about what it would be like to be in the situation in which she finds herself.
What would it be like to have needs you are no longer able to fulfill? What would you need from a person who might be able to help you? How would you like to be approached? How would you like to be treated? How will you know you can trust the person providing your care?
Answering the questions will help you to imagine yourself in her place.
↪ What would you have done in the following situation?
As I came up the driveway to the facility I saw a police car at the door, with about thirty people standing around watching what was going on. A gray-haired elderly woman sat in the back seat and the facility’s administrator, Phyllis, was talking to the policewoman behind the wheel. All the doors of the car were open. When she saw me, Phyllis asked me to help.
Alice, a resident with dementia, had gotten out of the facility, and a policewoman found her crying in the middle of the road a few blocks away. Although Alice was relieved when the police found her, she was now refusing to get out of the car.
Phyllis described Alice as easily frightened and perhaps a little paranoid. She had been refusing to leave the safety of the police car for almost an hour. It was summertime and the temperature was in the high nineties. Alice was at risk of dehydration and needed to be brought inside immediately. She was obviously frightened and was refusing water from Phyllis. Everyone, including the policewoman and the facility staff, had tried to get Alice out of the car but to no avail. Forcefully moving her was not an option unless there was life-threatening emergency.
I tried to imagine what it must be like for Alice. She probably left the facility because she wanted to go home or was looking for someone. However, once away from the familiar building, she most likely became confused and frightened. Standing in the middle of the road, she started to cry. The policewoman who found Alice offered her the safety of the police car and, once inside, Alice did not want to leave. It didn’t help that a crowd of people were standing around watching and calling to Alice. I assumed they were one of the reasons Alice didn’t want to leave the police car.
↪ How would you help Alice?
Putting myself in her place, I decided that Alice would like someone to save her from this situation. Raising my voice, I scolded the crowd: “What are you doing here? Leave that woman alone! Go away! There is nothing to see here!”
The crowd of people slowly disappeared. Now that I had taken care of part of her problem, I had Alice’s attention.
↪ How would you approach Alice? What would you say to her?
I knelt down beside her and introduced myself. “Are you all right?” I asked gently. “What can I do to help you?”
Alice started to cry again, asking for her daughter Peggy. Without pressing her to get out of the car, I asked her to tell me a little about Peggy and her family. Within a few minutes, and with the crowd of onlookers gone, I felt Alice had some trust in me. I suggested we go inside to get an iced tea while Phyllis called Peggy.
I was delighted when she took my hand and let me walk her back to the building. (The police were also delighted to have their patrol car back on duty!)
↪ Think about what you learned from this interaction.
As caregivers, our behavior has a lot to do with the response we get. Rather than bullying Alice by insisting she leave the car and walk past the crowd that had gathered to watch her, it was better to relieve some of Alice’s stress by giving her privacy and encouraging her to tell me what she needed.
Caregivers can be “heroes” in the sense that they rescue their patients from distressful situations. While the people you care for may not remember your name or even recognize your face, they will remember that they can trust you.
It’s better to figure out the needs of the person in distress by putting yourself in their place. This is good common sense dementia care. Being an advocate by reducing the stressors in the environment, or moving the person to a quieter area, can be the best way to reduce fear and develop trust. It takes a little time, but it can prevent a situation from escalating to an emergency.
A good description of how it feels to have dementia can be found in Understanding the Dementia Experience (Ghent-Fuller, 2002).