When Brenda retired from paid work, it was like a care-giving tsunami.
Her dad and stepmom moved in with her, her husband had a heart attack and she became a grandma — all within six months.
Brenda is one of 8.1 million Canadians who have taken on challenging unpaid roles — as informal caregivers for people living with physical or cognitive conditions or chronic life-limiting illnesses.
Her stress increased as her parents started to deteriorate physically and mentally. She tried to stay ahead of the ever-changing situation, but became exhausted after her dad started waking in the middle of the night and getting dressed to go out.
She looked on the internet for support in her care-giving role.
As co-scientific directors of the Aging, Community and Health Research Unit at McMaster University, we are working together with older adults with multiple conditions and caregivers like Brenda to promote optimal aging at home.
It also suggests that web-based interventions may help reduce depressive symptoms, anxiety and stress or distress for these caregivers.
Who cares for the caregivers?
Older adults with chronic conditions rely heavily on their family caregivers to coordinate their care, monitor medication and accompany them to appointments.
Increasingly, these older adults have multiple chronic conditions (MCC), such as dementia and stroke, not just one. And as this prevalence of multiple conditions increases worldwide, it’s associated with poor health and higher health-care use and costs.
Caregivers report that they do not receive adequate home care or respite services to support them in their roles. There are, for instance, long wait lists for long-term care beds.
While caregiving is rewarding, many informal caregivers experience stress and anxiety leading to their own poor mental and physical health.
Informal caregivers feel overwhelmed with multiple requests for their time and frustrated when they can’t plan too far in advance.
“I felt like I was spending a lot of time waiting. Waiting for people to get ready. Waiting for people to get back to me. Waiting at appointments,” said Brenda.
Some reach a crisis point and leave their loved ones in the hospital emergency room because they are unable to continue in their caregiving role. This contributes to an already overburdened acute-care system.
Web-based supports can help
We conducted a systematic review and meta-analysis that examined the impact of different types of internet-based interventions on caregiver mental health outcomes.
One example of such a web-based support is My Tools 4 Care, developed by our colleague Dr. Wendy Duggleby at the University of Alberta and her team.
We found evidence that internet-based interventions had a positive effect on reducing depressive symptoms, stress, distress and anxiety in caregivers of adults with a chronic condition.
The most effective category of online support was information and/or education with or without professional psychological support. Information provided together with combined peer and professional psychological support was also effective, to a lesser extent.
Caregivers in our study made recommendations to improve the content and format of online resources. Suggestions included: Providing personalized information about local resources; sharing practical caregiving tips and strategies; creating opportunities to connect online with other caregivers; and having user-friendly features that are easy to navigate.
Nova Scotia leads the way
Caregiving comes with costs to the caregivers — to their health and to their finances.
Half of caregivers are between 45-65 years of age, in the peak of their earning years. They often take time off work to take their loved ones to appointments, and some must leave work early when the health of their loved one worsens. Out-of-pocket expenses for equipment, medications and parking can also be expensive.
Research shows that caregivers spent $12.6 million in one year on expenses related to their roles.
Nova Scotia is the only province in Canada that has a monthly income or allowance for caregivers, known as the Caregiver Benefit Program. Financial assistance from the government for caregivers in other parts of Canada mainly take the form of federal tax credits and insurance benefits.
And yet caregivers make vitally important but often unrecognized contributions to our society. It is estimated that they contribute $25 billion in unpaid labour.
Change is urgently needed to better support our caregivers.