The number of Canadians living with dementia is set to almost double by 2030. More than half a million people currently have the condition, which includes symptoms such as diminished memory, language, and problem-solving skills. A report by Alzheimer Society Canada predicts the number to rise to 912,000 by 2030. Its impact on caregiving and the one in five Canadians who have provided care for someone with dementia are profound.
Research has shown that caregivers taking care of someone with dementia are especially adversely affected with higher levels of stress, more depression and anxiety symptoms, and lower levels of well-being. They also experience worse physical health outcomes, including higher levels of stress hormones and compromised immune response than non-caregivers. As the number of caregivers taking care of those with dementia grows along with Canadian population and median age, support for them with expanded resources has never been more critical or urgent.
It takes a team
Caregiving journeys are as unique as the individuals involved. For almost 10 years, Toronto-based Ron Beleno (shown below) cared for his father until his death in 2018. He was diagnosed with Alzheimer’s, which is responsible for 60-80 per cent of dementia cases. “Dementia has a higher level of need for caregivers,” says Beleno says. “You need to have a range of skills that you must learn quickly or pick up through failure. But every time you fail, you can find an important lesson that you can use to adapt and improve for next time. Having those skills give you the best chance of success.”
Beleno, a highly regarded caregiving educator and advocate, also discovered he couldn’t manage to care for his father alone. He says it’s a common belief among caregivers, especially at the beginning. “They start out as Superman or Wonder Woman,” he explains, “telling themselves they can handle it on their own. It’s so important to create a care team. I joke that even superheroes need other superheroes to help them since each one has their own special skills. It’s important to ask who else do you need on your team to help you move forward.”
One of the challenges that caregivers have is a lack of understanding, which increases their sense of isolation. In one study, 87 per cent of caregivers wished that more people understood the realities of caring for someone with dementia. Beleno points out that dementia is a progressive disease that is often unpredictable, requiring an ability to pivot and to respond constantly.
When Beleno’s father would go missing there was an urgency in figuring out what he needed to keep his father safe. He understood that he needed more help. He added to his care network by reaching out to neighbours and businesses nearby that he could call and ask to go look for his father if needed. This helped reduce Beleno’s stress levels and provide him with a better quality of life. It’s advice that he shares now with other caregivers so they can feel confident about achieving the life they want to live. Self-care is an act of love, just as much as caring for a loved one.
Tools for caregivers that make a difference
Access to a variety of resources is a critical issue for caregivers to support them in their care journeys. Teva Canada is dedicated to providing essential tools to make their journeys easier, including a comprehensive guide for caregivers looking after someone with dementia. It outlines practical approaches on how carers can live their best lives while they provide care. It covers the need for an occasional respite – a break from daily routines to recharge and destress.
It also talks about creating a network of friends, family and community organizations to lend a hand and advice on navigating the healthcare system. It delves into specific issues around dementia faced by caregivers, including wandering, incontinence, agitation, repetitive speech or actions, and sleeplessness, and provides practical coping strategies. The guide also addresses burnout, a common issue among caregivers, with a self-assessment quiz and strategies on how to avoid it.
Teva Canada also offers a website created especially for caregivers of loved ones with dementia and Alzheimer’s. It features Canada-wide support groups and resources, information about the stages of disease, advice for carers on self-care, how to make homes safe, preparing for a doctor or pharmacy visit, dealing with stress and communication tips.
These types of resources put success within reach. These types of resources put success within reach. To Belano, “Success is about quality of life for the families for the caregivers – one with less stress and the confidence to be able to live the life they want.”
Presented through a sponsorship from Teva Canada.