Daily Living

Being a caregiver when you are living with arthritis

Being a caregiver when you are living with arthritis

Juggling Act: Caregivers who are also living with arthritis

Researchers at the Arthritis Community Research & Evaluation Unit (ACREU) got a bit of a surprise when they analyzed data on people living with arthritis from the Canadian Longitudinal Study on Aging (CLSA).  “Originally, quite honestly, we were thinking we’d be looking at [people with] arthritis as [solely] recipients of care, and then discovered that in fact, a very high proportion of people with arthritis were actually care providers [for others with a health condition or limitation],” says Dr. Elizabeth Badley, senior scientist at the Krembil Research Institute in Toronto, where ACREU  is based.  The analysis focused on a nationally representative sample of more than 12,000 people aged 45-64. “Thinking about it,” Dr. Badley explains, “it actually made a lot of sense: people with arthritis have lives to lead, they have family and other responsibilities. We know that lots of them work, so caregiving was just another example of the way that people living with arthritis have the same kind of obligations as everyone else, and perhaps have to juggle taking care of their arthritis at the same time.”

What the research said

About 30% of the approximately 12,000 people of working age in the study are living with arthritis. More than half (53%) of those people living with arthritis reported providing some kind of care to adults or children living with a health condition or limitation, either in their own household or in another household (such as providing care for a parent or sibling). The kinds of care varied—for example, assistance with transportation (39%), assistance around the house (31%), and assistance with meal preparation (25%), totaling about 5 hours a week.
Caregiving was fairly evenly split between women and men, which Dr. Badley also says was unexpected. “Typically, in the caregiving literature the stereotype is that the average caregiver is a woman, so this surprised us a little bit. There are many more women in the workforce now and there is a whole literature on how men’s roles have changed over time, from the day when it was the woman who did the cooking, the cleaning, the caring, the gardening. I think a lot more men are joining in with child care, but perhaps also with senior care.”
How are the caregivers doing?We looked at people who provided care, and on the whole their arthritis caused them less difficulty than the people who received care, which makes sense,” notes Dr. Badley. “But nevertheless, more than half of [people with arthritis who are providing care] had at least two difficulties with basic activities in daily living: [including] holding things, getting out of chairs, walking around, crouching, those kind of things that arthritis affects. They had obligations to provide care independent of how they were affected.”
Another aspect of caregivers’ lives that the researchers examined was participation in social activities. “We found that people who provided care participated in social activities once a week or more, particularly meeting with family and friends,” says Dr. Badley. In other words, she says, caregiving can offer benefits to caregivers too. So while you may be visiting a family member to drop off some groceries and run the vacuum around, or giving them a lift to an appointment, you may also have a chance to sit down for a visit over a cup of coffee. There is a perception, perhaps, that the burden of providing care and going to work doesn’t leave time for anything else, she says. “But on the contrary, people who provide care seem to find the benefits of participating in social events, especially with family and friends.”

The takeaway for caregivers

So, what’s important to remember if you’re living with arthritis and also providing care for others? Pay attention to balance, says Jessica Wilfong, a research associate on the project. “Just be aware that you may be giving all the effort you have in providing care to someone else, rather than yourself.” It’s important for health care teams to keep this in mind as well, says Dr. Badley: “Be aware that people with arthritis may have other obligations, not only paid work but also looking after other people, and in talking about the things they need to do for their arthritis, this may be something for them to take into account.” 

At the time of writing, the research findings of Dr. Elizabeth Badley, Dov Millstone, Dr. Anthony Perruccio and Jessica Wilfong on caregivers living with arthritis are being prepared for publication in an academic journal. The abstract can be found here

For many years, the Arthritis Society has partnered with the interdisciplinary research team at the Arthritis Community Research and Evaluation Unit (ACREU) to evaluate the prevalence and impact of arthritis in Canada. By learning more about the burden of arthritis on Canadians and the healthcare system, this partnership has helped showcase how to improve support for people living with this disease.