Entering their World: Caring for Someone with Dementia

Some tips that will make it easier for both of you to navigate this confusing time

When I was deciding, as a new horticultural therapist, which population I would like to work with, adults with dementia were at the bottom of my list. I admit I was afraid of people with Alzheimer’s and other dementias. I didn’t know how to relate to them. They were always confused and seemed to live in an alternate reality. How could I reach them? How could I serve them?

As fate would have it (the gods have a sense of humor) I ended up working with dementia patients at an adult daycare center. At first, I was nervous. I didn’t know how to care for them. Their confusion confused me. Fortunately, I was in very good hands at a nationally recognized adult day care with a well-thought-out, time-tested philosophy of working with those living with dementia.

The founder of the center had started caring for adults with dementia in the late 80s. At the time, reality orientation was the standard of care for patients living with dementia. There was a big clock on the wall, a calendar with day, date, and year, and the city and state where the center was located. Every morning, the staff would make sure to let everyone know where they were, what they were going to do that day, etc. It was believed that helping dementia patients orient themselves to reality was the best method of helping them get through the day.

All day long, when a person asked where their mother was, the staff would make sure they helped the person understand that their mother had died many years before. After all, the person herself was 85. There was no way her mother could be alive.

If someone said they wanted to go home, the staff would let them know that they would be going home at the end of the day. If a patient demanded to have breakfast, they would be reminded they had already had breakfast. And so it went throughout the day; continually reorienting the patient to reality, attempting to reason with them, and correcting them over and over again.

Then one day, (as told by the founder of the center, “SK”) Mary was brought in by her daughter. As usual, Mary was inconsolable. Her mother had just died and she needed to go to the funeral. And, as usual, SK tried to orient Mary to the reality of the present. She showed her the calendar. It was 1986. Mary’s mother had died years before. There was no funeral to go to. This only caused Mary more distress until she was crying hysterically. This went on day after day.

Then one morning, in a moment of clarity, SK sat down next to Mary and took her hand. She gently told Mary how sorry she was for her loss. Then she said, “Tell me about your mother, Mary.” Through her tears, Mary told her all about what a wonderful person her mother was. She smiled when she related stories about how her mother was a prankster and always made everyone laugh.

Soon, Mary was laughing, too, and her tears dried up. When she finished telling SK about her mother, she was ready to join the group and participate in the day’s activities. According to SK, Mary never mentioned her mother again.

This was an “aha” moment for her, and she realized they had been doing dementia care all wrong. Reality orientation was not bringing comfort and calm to her clients. Entering their world became the new paradigm of care at this daycare center. While SK was not the first person to come up with this method, she stumbled on it through her experience and began to develop guidelines for her staff to use this method of care. I had the privilege of being trained at this center.

Here are some of the things I learned about patient-centered dementia care at our National Model adult day care center. I hope these guidelines will be of help if you are caring for someone living with dementia.

First, it’s their world. Don’t try to change their mind.

When a person is living with dementia, whether it’s Alzheimer’s, Lewy Body, or frontal lobe dementia, their reality changes. Their short-term memory is usually the first to go, so they may be confused about what’s happening right now, but can tell you in minute detail what they did when they were 10.

Because someone with dementia loses the ability to retain new information, they may ask the same questions over and over again, or insist that things are different than you think they are. Arguing with them just gets everyone upset, and can cause a person with dementia to become agitated and sometimes violent.

It is better for you, and for them, if you take a breath, step back, and decide how to enter their world with the least amount of struggle.

The rule of thumb here is “Don’t correct; Redirect.”

I had a gentleman come to me one day in a panic because he could not remember where he had parked his car. He knew it was out there in the parking lot, but he was worried he had not locked it.

Of course, his car was not in the parking lot. His son had dropped him off that morning, but I looped my arm through his and said, “Come on. Let’s go out and look for it.” We walked out into the parking lot and started the search. The lot was quite large, and we walked both sides of the building. He couldn’t see it, but just the act of looking for it seemed to have calmed him down. He was puzzled about why it wasn’t out there. I said maybe his son had needed it and come and borrowed it. He thought that was possible. At this point, I suggested we go in and get some coffee and I would call his son and see if he had borrowed the car. He liked that idea.

We went in, I settled him with a cup of coffee and went into the office. I did, indeed, call his son and tell him what had transpired. He was glad I had been able to calm his dad down. He was ok with me telling him he had borrowed the car. I went out to check on my patient and he was engaged in a spirited conversation with a couple of the men. I didn’t disturb him. He didn’t ask about the car the rest of the day.

If I had tried to convince this man that he did not drive his car to the center and that his son had dropped him off, this would not have oriented him to reality. Instead, it would have disoriented him even more as he tried to convince me he was right, and he would have become more agitated. Looking for the car and offering him a cup of coffee redirected his attention to something he enjoyed, helping him forget about the car altogether.

Things don’t have to be a certain way. Remember the big picture.

Another morning, a lady became irate, shouting across the room that no one had given her breakfast. “Can’t a person get fed around here?” she demanded. She had just gotten up from the table and had eaten every bite of her breakfast. But trying to convince her of that would have done no good. So I walked over and helped her to the table. I told the staff in the kitchen to please bring her some toast and jam and a cup of coffee.

She happily ate her toast and drank her coffee and then returned to the group with a smile. It didn’t hurt a thing to let her have another piece of toast. Arguing with her would have caused an uproar and upset all the other participants.

Don’t be too attached to your idea of how things should be. Ask yourself if it really makes any difference in the long run.

Is it ok to lie to dementia patients?

There is some debate about whether it is ethical to lie to dementia patients. In a recent New York Times article, Dr. Sandeep Jauhar, a cardiologist, tells how he had to grapple with this concept when his father was living with Alzheimer’s. As he gained experience caring for his father and did his research, he came to conclude that lying was sometimes necessary.

I now think that lying can be the best strategy a dementia caregiver can use, not just practically but also morally. Deception, I now believe, may uphold a different conception of the patient’s dignity — respecting the integrity of his worldview, however askew it may be. — Dr. Sandeep Jauhar

Respecting a dementia patient’s worldview is much more compassionate than brow-beating them into accepting a reality that they cannot grasp. Our goal at our day center was first and foremost to preserve each patient’s dignity. Arguing with them was not a part of that paradigm. If we could find a way to safely enter their world with them, helping them to find a place of calm and peace, then the “lies” we told were justified.

We are told our entire lives that lying is wrong, and even a sin, but when we are caring for someone whose brain is altered, we owe it to them, and to ourselves, to make things as easy as we can. If this means going along with their reality, I think we can be forgiven for the lies.

Dr. Jauhar goes on to say, “However, I have come to learn that the relationship between ethics and treatment in dementia is a complicated one. The demands of truth-telling exist in tension with other moral imperatives, such as consolation, reassurance and empathy.”

Consolation, reassurance, and empathy were the guiding moral imperatives for the care we gave to our participants at the adult daycare center. Compassion and respect for each person, no matter how impaired, was our guiding principle. Sometimes that meant doing what looked like lying, but in reality, was a way of honoring each person’s direct experience with the world they found themselves in.

Using their past to make sense of their present behavior.

There was a woman who barely stood 5 feet tall at our center, but she was a bundle of energy. She would pick up a musical instrument and bang it on the table, the chairs, the chair rail, and the doors. As we began to observe her behavior more closely, we noticed a pattern. Someone pulled her file and discovered something that made sense of her odd behavior. She had had a cleaning service in her working years. She was “cleaning” the center with the only thing she could find, a maraca.

When we replaced the maraca with a rag, she happily cleaned for several hours a day. Sometimes she would clean you if you were standing in her way! Understanding her history helped us make sense of what was happening with her, and helped us to make her time at the center happy.

Caring for dementia patients is hard work.

It can be frustrating to put ourselves into their world over and over throughout the day. I cared for a gentleman for a day while his daughter took a much-needed break. He was a sweet man, very gentle and amenable. We had the same exact conversation a hundred times that day. He asked me the same questions a hundred times. I answered them a hundred times. The only thing that would distract him was if I asked him to sing for me. He had a beautiful voice and he enjoyed performing for me.

By the end of the day, I was utterly exhausted. I know you probably are, too.

If you are caring for someone with dementia, I hope you will find the support you need. I hope you can find a day program like the one where I worked, where your loved one can be cared for by trained caregivers, allowing you to get a break. If there is no program available in your area, I hope you will ask for the help you need from friends and family. Most of us are not trained to work with dementia patients, but many of us find ourselves in the position of having to do so. Be easy on yourself and your loved one. What you are doing is hard. Make it easier by allowing your loved one to have their own reality, whatever that looks like.