Caregiving: The pluses and the not-so-pluses Part 1

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?