I recently came across an article from 2013 by a whole host of authors associated with the World Health Organization World Mental Health Surveys. (Twenty-six, to be exact! I wonder what that collaborative process was like and how they negotiated the order of authors.)
I was interested in this article because it looks at caregiver burden across 20 countries. It includes the U.S. – among the high income countries as classified by the World Bank – and Romania – among the upper-middle income countries (although not the other countries I’m focusing on right now – Finland and Estonia).
The study looked at adults aged 50 and older who were caring for a first-degree relative with a serious physical or mental condition (a total of 13,892 people). They answered questions about their experience of different kinds of burden such as the type of tasks they did and the time it took, financial burden in terms of money spent and earnings foregone, how much caregiving affected their life, and how much it caused psychological distress or embarrassment.
One of the key findings of this study is that the basic patterns (proportion of caregivers experiencing burdens, amount of time spent providing care, etc.) are quite consistent even across countries with very different economic, cultural, and service system structures. The challenges of caregiving are, apparently, global.
Here are a few of the more specific findings:
- Across all 20 countries, 36% to 43% of caregivers experienced some type of burden in their role.
- Between one-quarter and one-third reported time burden, financial burden, and psychological distress. A much smaller proportion reported embarrassment.
- On average, respondents spent 18.9 hours per week on caregiving activities with the most time (just over 23 hours) spent in low/middle-income countries and the least time (16.6 hours) in high-income countries.
- Not surprisingly, financial burden was higher in low/lower-middle income countries than in high and upper-middle income countries.
- Women reported more burden than men on all indicators except financial burden.
- There was a lot of variation across countries in terms of differences by demographics. In fact, the only clear and significant pattern was that women in high- and upper-middle income countries reported more psychological stress and more time burden than in low-income countries.
So . . . globally family members over the age of 50 are providing a lot of care.
To help put the amount of care in perspective, in high-income countries respondents reported about 206 hours per week per 100 caregivers aged 50 and older. In the U.S., this translates to approximately 3.2 million full-time equivalent older adults working as informal family caregivers and $5.3 billion a year, which is equivalent to the average annual salaries of over 130,000 U.S. workers.
That’s a lot of people power and a lot of people facing significant challenges.
Of course, caregiving can have its positive side as well. I just reviewed a book of poetry and short fiction about the experience of caregiving for another blog. This collection portrays the complexities of caregiving, including how the positive and negatives intertwine, in a visceral way that facts and figures just can’t.
Research does suggest that a number of things help offset the burden. This includes the relationship between caregiver and care recipient before the illness; rewards from caregiving such as feeling closer to your loved one and doing something that feels important and meaningful; how the caregiver copes with difficulties; and the availability of services for both the caregiver and the care recipient.
I’ll look at some studies of the more positive aspects of caregiving in the next couple of posts. Until then, have you thanked a family caregiver today?
I find this to be true in my life: “…a number of things help offset the burden” [of caregiving]. In my case, I have financial ease so I can order dinner when I’m exhausted. I have challenging and fulfilling work to do in a flexible environment; colleagues, friends and family who enrich my life; and (sometimes) access to leisure. My father still “knows” me and likes me. I also take care of my sister and, while that is sadder and harder, I think it has taught me to love in the moment because I never know when or how the next moment might be. At the same time, caregiving is an incredibly lonely and isolating experience. Many of us do it but we don’t seem to connect around it.
Amanda Toler Woodward says
Thanks for your comment Victoria. Like many of these experiences, it’s hard for those of us who aren’t in it everyday to fully understand the challenges. The loneliness and isolation is something I imagine many of don’t think about.
Victoria, I think I know you and you are a future me.
I’ve only been caring for my Dad for about 8 months. Right now we have mostly good moments, but I see your days ahead of me as my Dad declines. About 5% of the time he says and does things that make no sense, and 5% he is “out of it”, but 90% of the time he is all there – still “my Dad”. He and my kids (9 and 11) have a great relationship and they understand that he has bad times and look for ways to help him. Even with a very supportive husband and sisters, I see that lonely and isolating feeling. As much as we want to know other caregivers, the time we can dedicate to ourselves disappears when work, doctor’s appointments, and play dates that benefit others take precedence.
I thank Amanda and you for writing about it so I can see where we are headed.
Amanda Toler Woodward says
Thanks for sharing. I’m glad you are finding this conversation useful.