by Julia Dima
Dementia can take away someone’s ability to do daily tasks, like bathing or eating a meal. But providing care to those living with dementia is about more than feeding and cleaning them.
There are over 17,000 people with some form of dementia in Saskatchewan today, with 4,000 new cases diagnosed annually. According to a study done by the Regina Qu’Appelle Health Region, the number of dementia patients in the province will exceed the number of available beds the province has in care facilities. The study also found that at-home caregiving is on the rise.
In 2012, the study says, 9 million hours of care was given to dementia patients by family and friends, and that is expected to rise to 30.5 million in the next 25 years.
Many families are looking to options like private home-care and care homes to meet the challenges of caring for loved ones with dementia. Today, there’s over 200 personal care home options. Private home care services are also emerging as an alternative. One of these is Nurse Next Door, a home care service that works across Canada.
“A big challenge in providing care to dementia patients is family caregiver burnout,” says Rob Van Norman, who operates Nurse Next Door in Saskatchewan. “That’s a 28-hour day, and it’s exhausting, so our caregivers can also give some respite to those primary caregiver family members. Family caregivers need to take care of themselves and get the help they need so they can continue to be there for their loved ones.”
The goal of Nurse Next Door, Van Norman says, is providing care beyond the basic life necessities.
“We believe that it’s not just about making sure people get a squeaky clean bath and a nutritious meal. We really believe it’s about supporting some of the needs people aren’t aware they have – we want to make life better however we can. We take care of necessities, but we really specialize in finding out what the things are that bring intrinsic happiness to people’s lives,” he says.
Van Norman says the experience of providing care to dementia patients is rewarding – but it is also emotionally challenging on the caregiver.
“The clients get frustrated, and communication is a challenge, especially when the client believes in a different reality than the caregiver, which can happen with dementia. There is sometimes agitation and aggression, and the caregiver needs to know how to respond to that and de-escalate that situation,” Van Norman says.
“There is a lot of sadness that comes with people realizing they have dementia, and that is also tough on the caregiver. For our caregiver, it does take a toll, which we address by having de-briefing sessions with caregivers, where we talk about these issues, and can offer a team environment, where they have support.”
Bill Horbach manages Brightwater Senior Living in Regina, a private senior care home that focuses on caring for dementia patients. He says dementia care has to be about the person, not their illness.
“What we implement with our staff is to be kind, and treat people in the home as you would anyone. The dementia doesn’t matter when you sit down and chat with them,” Horbach says, “You use who the patient was before dementia, and who they are now to holistically treat the person.”
Horbach adds that helping the patient maintain autonomy is a large part of holistic care. He says within the home, residents have tasks, chores, activities, and the opportunity to maintain their hobbies, whether it be painting or gardening.
“That’s huge. It gives them a sense of purpose. Even if it’s as simple as making crafts together, you can see people’s eyes sparkle – it’s just the art of being human, we need to have purpose, and that doesn’t go away when you get dementia.”
Within the health care system, care techniques are taught from the first stages of educating caregivers. Ann-Marie Urban, with the Faculty of Nursing at the University of Regina says education about dementia starts from the first semester of the nursing program. She says the program focuses on both basic health needs, and personal needs of patients with dementia.
“We start with basic fundamentals of physiology, so what is happening to the brain of the person. Then in the second semester we move into the skills required to work with people with dementia, and we really focus on the communication aspect. Because you are working with, and caring for that person, but also their families, who struggle with the changes that come with dementia as well,” says Urban. “In terms of the skill-set you need to deal with that, the students who go into long-term care settings, one of the things they focus on is communication – how do you communicate with someone that is going to take longer to understand, and needs patience?”
Urban says nurses can suffer from caregiver burnout.
“In the clinical environment, there’s typically a group of seven students, and we always have a post-conference setting where we sit down and discuss how the day went, and sometimes, there’s something that happens that the student was not prepared for, like an outburst from a dementia patient, or in the example of one student, her patient reminded her of her own grandfather, and that was very difficult for her,” Urban says. “So, we use these de-briefs to deal with these feelings, because if they don’t, it will sit with them, and as caregivers, they can experience burnout syndrome – everyone needs that.”
