In my last post, I shared some research that found similar patterns of burden among caregivers across 20 countries. The bottom line: caregiving is hard work no matter what the structure of the health care and social welfare systems.
Today I look at a slightly older study that uses data from over 5,000 caregivers in Germany, Greece, Italy, Poland, Sweden, and the UK. I found this study interesting because it gives a bit more fine-grained picture of the experience of caregivers under different social welfare structures. (Spoiler alert: It’s not always clear how systemic structures and caregiver experiences are related).
The authors identify groups of caregivers with common characteristics and look at how these groups are similar or different across countries. The groups are identified based on a wide variety of things including caregiver burden, caregiver demographics, and care recipient charateristics. Caregiver burden includes subjective burden – as reported by the caregiver – and objective burden – based on how impaired the care recipient is, and therefore how much care they need.
The authors identify seven categories of caregivers each of which is found in every country, although there are some differences in the prevalence of categories across countries.
And the categories are . . . [drum roll please]:
- Caregivers who are highly burdened and living with the care recipient. They are unemployed daughters (or daughters-in-law) and are caring for a parent who is highly impaired. This accounted for 19% of caregivers and is the most “traditional” model of family caregiver. These caregivers tend to have low levels of education and spend more than 10 hours a day on caregiving.
- Caregivers who were highly burdened, but not living with the care recipient. These also tend to be daughters. However, they are employed and caring for a parent who is slightly or moderately impaired. This accounts for 12% of caregivers.
- Burdened wives – I think the title speaks for itself – are about 15% of caregivers.
- Moderately burdened husbands – ditto – are about 8% of caregivers.
- Caregivers who are experiencing low to medium levels of burden and caring for a relative who is highly impaired (about 16% of caregivers). These caregivers tend to have a high level of education and good access to support. This probably accounts for the lower level of objective burden they report. Even though their relative needs a lot of care, their support network helps them maintain some independence from their caregiving role.
- Children (or children-in-law) who report low burden and are caring for a moderately impaired parent. This is 13% of caregivers.
- Caregivers with low burden who are caring for a slightly impaired relative (about 17% of caregivers).
Overall, 30% of caregivers used at least one support service in the last 6 months. Sweden, the UK, and Germany have more formal support services specifically for caregivers.
- About a quarter of caregivers in the UK are in Category 7, the group with the lowest subjective and objective burden.
- Caregivers in Germany fall into Categories 5 (25%) and 1 (22%). These are the categories where care recipients are the most impaired, although those in Category 5 report low subjective burden.
- In Sweden, however, despite the availability of formal supports, almost half of caregivers were in the most burdened groups (categories 1, 2, and 3) and a smaller proportion of caregivers (22%) reported using services specifically targeted for them compared to other countries.
Support services specifically targeted toward caregivers were not available in Greece, Italy, or Poland.
- In Greece and Italy, roughly 30% of caregivers were in the “traditional” caregiving model (Category 1).
- In Poland, however, despite this lack of services, most caregivers were in groups with lower burden (26% in Category 6 and 23% in Category 7). One possible reason for this is that over half of caregivers in Poland received monetary care allowances paid directly to them. The UK is the only other country where this is the case. Also, a higher proportion of care recipients in Poland receive home-based health care which may indirectly relieve some of the subjective burden on the caregiver.
What to make of all this? A few thoughts come to mind (and, of course, I would like to hear your thoughts as well). First, with the exception of Poland, the countries in this study all do better than the U.S. on a variety of measures outcomes such as quality of care, efficiency, access to services, equity, and population health. (See, for example, the most recent World Health Statistics report or this report by The Commonwealth Fund. That can’t be a coincidence. They must be doing something better than we are.
Second, the availability and accessibility of services – as influenced by systemic structures – is probably part of that. Looking at the caregivers in this study, those in the UK and Germany, with some of the most structured formal services, seem to be doing well. But, it’s not the whole story because caregivers in Sweden have significantly amounts of subjective and objective burden (30% fall into the “burdened wives” category) and appear to use the wide range of services that are available less.
Third, the type of supports may be particularly important. Caregivers in Poland are doing well with few social supports, but with monetary compensation given to directly to caregivers and more home care for the recipient that may indirectly relieve some burden.
I have a friend in the UK with a 96 year old mum. Services are extremely difficult to come by but it may be because she lives right in London, in Hamstead. The only in-home available caregivers tend to be foreigners who are lovely caregivers but tend not to know or speak much English. So, one of the difficulties and a stressor is the potential emotional connection with a disconnect for verbal communication. Strange to me to think of the complicating factors in elder care.
Thanks for the post, Victoria. These are the kinds of stories I am trying to gather for my book (although the UK isn’t one of my sites, sadly). They highlight how complex these issues are and how varied the experiences. Even in a country where services are supposedly affordable, they are not necessarily available. Quality of care can vary depending on where you live (or if you can pay for private services out-of-pocket). There are also important issues to think about in terms of workforce development. So much to do!