Creativity is a term usually associated with artists, not caregivers. But Karen Tyrell insists it’s also a key factor when it comes to caring for someone with dementia.
“New ways of thinking and creative ways of helping a loved one can make the day-to-day so much easier,” says the local certified dementia practitioner in a phone interview. “What really worries me is caregiver burnout. When I see the relief people get from knowing they can use different strategies to help their loved ones, and from knowing their loved ones aren’t so distraught or upset, it’s so rewarding.”
Tyrell has years of experience working as a recreation assistant with people with Alzheimer’s disease and other forms of dementia and has held the executive director position with the Alzheimer Society of Leeds-Grenville in Ontario, where she used to live.
After moving to B.C. in 2009, she started her company, Personalized Dementia Solutions, out of her passion to help families cope with the perplexing and challenging conditions, as well as out of frustration.
“Seeing inappropriate approaches to caring for people with dementia bothers me to no end,” she says. “Over time I’ve noticed over and over that many family members and caregivers aren’t aware of unique ways of managing dementia behaviours. The biggest reason for that is that people are not fully educated, and education is vital in order for them to cope better with stress. When they know more, the better caregivers they can be.”
Tyrell has written a book to help people understand and deal with dementia and Alzheimer’s. Geared to family members and caregivers as well as health-care professionals, Cracking the Dementia Code: Creative Solutions to Cope With Changed Behaviours is a fascinating read with anecdotes, facts, helpful hints, coping strategies, and resources for people to find additional support and information.
According to the Alzheimer Society of Canada, dementia is an umbrella term for a variety of brain disorders. Symptoms include loss of memory, judgment, and reasoning. Changes in mood and behaviour occur as well. Brain function is affected enough to interfere with a person’s ability to function at work, in relationships, and in daily activities. Alzheimer’s disease is a fatal, progressive, and degenerative disease that destroys brain cells. It accounts for 64 percent of all dementias in Canada. Aging is a risk factor for Alzheimer’s, but the disease is not a normal part of aging.
Tyrell explains that a proper diagnosis is essential before determining creative ways of coping with anxiety and aggression that can sometimes accompany dementia.
“You have to know what you’re dealing with,” she says. “There are several different types of dementia. Some can be treated; it might not be incurable Alzheimer’s. You don’t want to say ‘Grandma’s getting forgetful; I guess she’s got dementia.’ What’s causing the dementia? Could be thyroid condition, it could be a vitamin deficiency. Depression can cause many of the same symptoms as dementia.”
It’s equally vital to identify reasons that difficult behaviour is happening, Tyrell says. People can do that by becoming detectives and gathering the facts: is there something physical happening to the person with dementia that could explain a challenging behaviour, such as pain, illness, or hunger? Could there be environmental factors or other triggers behind a person’s irritability or tendency to wander? In addition to other strategies, Tyrell encourages caregivers to ask those with dementia or Alzheimer’s specific questions about how they’re feeling.
From there, and especially in cases of later stages of Alzheimer’s disease and related disorders, people can use what she’s termed “therapeutic reasoning” to help those whose memories fail them. Tyrell describes it as reasoning with those with dementia in a way that’s logical to them and their world—though not necessarily in actuality—to create a calm feeling. In her book she recalls a patient named “Clarence” who often tried to leave his long-term care home right after breakfast. Tyrell went on her fact-finding mission and learned that in his mind, he was still living on a farm and needed to milk the cows, a chore that always happened right after breakfast.
“If you think about Clarence’s situation from the point of view of reality, you know he is already home,” Tyrell writes in her book. “So why would you even wonder why he wants to go home? The answer is, if you don’t ask, and you simply address his behaviour of trying to escape by trying to talk sense into him, or preventing him from making it to the front door, you will become exhausted and fed up.”
Tyrell conducts workshops called Cracking the Dementia Code and How to Maintain a Healthy Brain and says that caregivers need to know it’s okay to seek help. “Asking for help is a way of being proactive,” she says. “It’s not a sign of failure. I could not care for one person with dementia by myself 24 hours a day. It’s not humanly possible. Caregivers are amazing people, and they need support too.”