Talking Points: Tips for Communicating With Dementia Patients

My mother was sure there'd be a flood in her town — but only on her street. She'd read a book about the 1889 Johnstown Flood and became convinced that because she'd been too outspoken in her life and because the government controlled the weather, a street-specific flood would be their revenge against her.

Now, a flood wasn't out of the realm of possibility since she lived a block away from the Sacramento River, which, in the winter, occasionally flooded. Only once in the 30 years she'd lived in her tiny Delta town, did she have to evacuate. However, when the flood talk began, it was summertime, and there wasn't any flooding in the forecast. It would be months before flooding would be an issue. Still, every conversation with my mother began and ended with the upcoming flood — nothing or no one could persuade her to think differently or ease her mind on the upcoming disaster.

She was losing control over her mental state, but we, her family and friends, were used to her odd behavior, and no one thought much about it. All my life, my mother had a way of spinning her eccentricities and making them seem charming instead of disturbing. When she got rid of most of her possessions and lived as an extreme minimalist or crawled on the ground rather than using a wheelchair, her behavior made sense to her.

Everybody in my mother's life acted as if they believed her flood prediction. But when supposed flood dates came and went, and she stayed convinced of the upcoming flood, we tried arguing with her, using logic, or flat out telling her she was wrong — everything you don't do with a dementia patient. The more we denied her reality, the more agitated she became, and her anger grew in intensity.

Since I lived 300 miles away, I visited her monthly and called her almost every day, but that wasn't enough. She'd phone me to find out what day it was and whether it was morning or night, even though there was a clock beside her bed. She began to see people who weren't there — not her own ghosts of the past but hallucinations of strangers walking by her house or smoking in her backyard.

As her body weakened, her senses dulled, and her ability to take care of herself diminished. She was accepted into home hospice care. Though she always knew our names, she occasionally got confused and referred to me as her mother. When I pointed out I was her daughter, she'd get annoyed and pretend she knew it all along. My mother had no control over her moods and frequently got angry. It was when Katherine, her hospice nurse, told me my mother had both dementia and mental illness that everything made sense.

Now that my suspicions about my mother's mental state were confirmed, I stopped talking to her in the way I had before. I was uneducated about how to speak to her without upsetting her, so I did some research and got advice from the hospice staff and my mother's caregivers.

Although there's no one way to communicate with a dementia patient, some general rules apply and can be modified for each individual.

Pre-conversation set up. If you were having a dinner party, you'd set some things up before your guests arrived. Speaking to a dementia patient needs that same kind of awareness and diligence. Before the conversation starts, ensure the person is wearing glasses or hearing aids if they are using them. You want them to see and hear you clearly. Confirm that they don't need to use the bathroom, aren't hungry or thirsty, and they're not in pain. If they need something, take care of the issue, and don't wait until after the conversation. The room should be well-lit, without distractions such as the TV being on or too many people in the room. The patient should be relaxed and not in an agitated state.

Keep it simple. According to the Alzheimer's Society, suggestions include speaking clearly using simple but positive words in short, simple and concrete sentences. Never interrupt them or talk them over them as if they're not in the room.

Keep your composure. My mother used to say that patience is a virtue, and when it comes to communicating with people with dementia, patience is critical. Allowing the patient enough time to process the information and respond is extremely important. There's so much going on in the dementia patient's head that you don't want them to feel pressured to respond quickly.

Communicate with more than your voice. Be aware of your body language, posture and facial impressions. You don't want to say something your body doesn't visually agree with, but you can convey a lot of meaning without saying a word.

Be flexible. There are situations in life where it's helpful to practice what we're going to say, and which can be beneficial when talking to a dementia patient. You don't want to be too practiced or too rigid with your words. Go with the flow but know what you want to convey. If the person gets agitated by the topic, redirect, reframe or change the topic. Yes or no questions work best; limit your questions to one or two at a time. And avoid getting too complicated. Don't be condescending or speak to them as if they're a child.

When it came to speaking to my mother, my niece instinctively knew how to do it without upsetting her.

"Do you see the man over there?" my mother asked my niece during a visit.

"What man?"

"The one sitting right there. Do you see him? He has a gun pointed at you!"

"Go away, man. Shoo shoo," replied my niece without skipping a beat.

My niece didn't argue with my mom or correct her, but calmly accepted her version of reality.

Never put undue pressure on the dementia patient. Don't ask them, "Do you remember?" Say instead, "I remember when," and identify yourself instead of asking if they know who you are. Try not to get annoyed when they ask the same question more than once. The best thing you can do when speaking to a dementia patient is to expect the unexpected and take it in stride when the conversation twists and turns in ways you didn't plan on.

Approximately a year before her death, my mother was bedridden and at the height of her hallucinations, delusions and mood swings. Her senses were weakening at a rapid pace. During a visit with her, she told me she was kidnapped by aliens nightly and held in a room that looked exactly like hers with the same yellow walls, the paintings of purple irises and the same view out her window. Her anxiety and fear were coming off her in waves, and it was affecting her sleep.

"The aliens aren't unkind to you, are they?" I asked.

"No, they treat me well."

"And they return you home each morning, unharmed."

"Yes."

"So, since you know you won't be hurt, you can relax. Nothing bad is going to happen to you; you're safe."

"Yes, that's true. I feel better," my mother said.

It was a short conversation, but I was proud that I could comfort her and get rid of some of her fear and anxiety. My mother liked feeling that someone was on her side and believed her.

It wasn't always easy talking to my mom, but using some of those tips, listening more than I spoke, and reminding myself of what my mother was going through, helped me be empathetic and patient, and I developed a better understanding of my mother as a person.