I own a senior home-care company in Toronto, and most of our clients have some form of dementia. Last week, one of our clients, who I will call Mrs. Smith, called to cancel her caregiver for the following day:
"I feel like I am doing better, Renée, and I just want to see if I can get through the afternoon without a caregiver."
"Sure, Mrs. Smith," I said, and cancelled her caregiver.
The next day Mrs. Smith called and angrily demanded why her caregiver had not shown up. I apologized for my oversight. I told her that we would ensure that her caregiver was there within half an hour. Trying to explain what really happened would have been like trying to convince her that her name was not Mrs. Smith. Rule No. 1 of dealing with people with dementia: Never argue.
According to the most recent count from the Alzheimer Society of Canada, 747,000 Canadians suffer from Alzheimer's disease and other dementias. That's 14.9 per cent of Canadians 65 and older. For those living with dementia, life can be very frightening. Every interaction feels like a big question mark. For those of us who work with people with dementia, and those people who have loved ones or friends suffering from dementia, a few changes in the way we communicate can bring great comfort, and diffuse potentially anxious situations. Here are some key tips that have helped me over the years:
1) Never argue. Ever. Drop your need to be right. If Dad says he wants to call Aunt Eileen, who died 50 years ago, just pick up the phone and dial. Be creative; leave a message somewhere. Trying to convince Dad that his aunt passed away a long time ago will be confusing and distressing. In our industry, we call these little white lies "therapeutic fiblets." They preserve our clients' dignity and peace of mind, two things more important than having a firm grasp on reality for many dementia sufferers.
2) Redirect. After your therapeutic fiblet, try to get Dad thinking about something else. Get Dad to tell some stories about Aunt Eileen, and then use something in that conversation to direct the conversation elsewhere: "Aunt Eileen used to walk every day? Did you want to take your walk now?" Talking about anything not having to do with Aunt Eileen may take Dad's mind into a different place and he may lose the need to call his long-dead relative. And if he does not forget, then just check messages to see if Aunt Eileen has called back and repeat.
3) Be aware of your mood and your body language. People with dementia read your body language to pick up cues. If you are distressed or frustrated about anything, your mom will read that discomfort and surmise that something is wrong. She won't know what it is and may assume that she has done something wrong. When you are calm, she will be calm. When you are anxious, she will take that on, too. Check yourself at the door as much as possible.
4) Strike the phrase "remember when" from your vocabulary. "Remember when we talked about this yesterday Mom, and you said you wanted to go to dinner?" Mom does not remember, and this question could make her confused and embarrassed.
5) Offer options and ask yes or no questions. Phrase questions simply, and ask questions that require a yes or no answer, not a narrative response. Always offer choices when possible, and present no more than two options. People with dementia are likely to pick the last choice, so craft your questions accordingly. The need to choose and feel autonomous and in control stays with us, even if our memory is fading. Offering Dad choices will give him a sense of control, a hot commodity in a dementia sufferer's life.
To paraphrase Bob DeMarco of the Alzheimer's Reading Room (a respected website about dementia-care issues): "If someone with dementia thinks something is true, it's true." Mrs. Smith was right to think I had forgotten to send her caregiver, because she did not remember that she had cancelled. It was my job to accommodate her reality, admit my "mistake," and fix it. Honouring the reality of the dementia sufferer in your life will create empathy, smooth difficult interactions and create opportunities for moments of surprise and joy. Who knows? One of these days, Aunt Eileen might pick up the phone when you call.
Renée Henriques is a registered nurse and the owner and managing director of ComForcare Home Care Toronto, providing personal support services to seniors. Her passion for seniors and their families stems from her past work as a neurosurgical nurse, and her experience going through a lengthy caregiving journey with her own family members.