Carer, Caregiver, What's in a Name?

The following commentary, written by Carol Levine, director of the Families and Health Care Project, was originally published on April 20, 2016, by the Collaborative Family Healthcare Association's “Families and Health” blog. It is reposted here with permission.

“England and America are two countries separated by the same language.” So said Oscar Wilde or George Bernard Shaw, or maybe both. Our countries use different terms for the same thing (“trainers” for “sneakers”) and the same term for different things (“football”). Still, in the realm of health and social policy, both countries face similar challenges in supporting an aging population. In both countries the people who provide most of the care are family members and friends. In the United Kingdom, that person is called a “carer.” In the United States, the most common designation is “family caregiver,” with “family” interpreted broadly.

The differences go deeper than terminology. In the UK, there is a Minister for Social Care and Community responsible for implementing a National Carers Strategy. In the US, no one is in charge of a national family caregiving strategy, because there isn't any. State governments may have their own strategies, but they mostly focus on “long-term services and supports” available primarily to Medicaid beneficiaries, for which states pay a big portion of the costs.

It is difficult to compare national policies without examining their history, demographics, economic context, and other critical factors. In the UK medical care is provided largely through the National Health Service; carers' services are in the realm of social care, that is, nonmedical support. In the US, despite recent efforts to bring these two worlds together, the effort is hampered by fragmentation at all levels.

Big picture differences aside, it is instructive to compare the recently released UK Department of Health's online survey for carers and the professionals who support them, and a similar survey from Carers UK, a leading advocacy organization, and to note some differences with the US experience. More than just underscoring the need for information to guide policy on the US side, the UK surveys suggest some opportunities in the US to obtain standardized information from family caregivers and to create an impetus for a national strategy.

Caregiver surveys are tools that give policy makers important information about the diversity of the population, the range of their contributions to the health care and well-being of the people they care for, the challenges they face, and their unmet needs. Surveys are also one way to give family caregivers a voice in policy development and implementation. Because in the UK there is a defined locus of responsibility for meeting carers' needs, the survey findings can be more easily incorporated into planning than in the US, where accountability is diffuse and elusive.

UK Department of Health Survey

In preparation for a new Carers' Strategy, the UK Department of Health has issued a “call for evidence” and is seeking views from carers and their families, and from professionals who work with them, on what more should be done to provide support. Unlike US caregiver surveys, mostly conducted by nonprofit organizations, academic institutions, and some federal agencies, all with different definitions, purposes, and populations, the most distinctive feature of the UK government survey is its emphasis on “young carers” (under the age of 18). Several sections are specifically devoted to them, and throughout questions are phrased so that there is an option for young carers to reply. With the exception of one national survey devoted to young caregivers in the US, published in 2005, all national surveys include only caregivers over the age of 18. (An increasing number of caregivers fall into the “millennial” category, ages 18-34.) Just as in the UK, there are many children and teenagers under 18 in the US who are caregivers, but we don't count them, identify their needs, and (except for a few pioneering programs) support them.

One issue raised by the UK survey is also common in the US: identifying people as carers. The survey asks whether the respondents received help to identify themselves as carers and whether that was important. It also provides space to suggest specific ways to help carers recognize that they are not just daughters, sons, or spouses, but also carers.

The UK Carers Act of 2014 requires local governments (known as “authorities”) to provide a range of information and advice services to carers, including an opportunity for an assessment of their needs, which is their legal right. Carers over 16 may be eligible to receive a Carer's Allowance of £62.10 a week ($89.19) if they provide over 35 hours of care a week and earn less than £100 ($143.62) a week. The survey asks about carers' experiences obtaining this support.

Similar to US surveys, the government survey asks about physical and mental health problems and difficulties balancing paid employment with caring responsibilities. It also asks about “ensuring a life outside caring,” which in US surveys is usually phrased less elegantly as “quality of life.”

Carers UK Survey

Every year Carers UK surveys carers and others about what they do, gaps in services, and other items. Like the government survey, this advocacy organization survey has many boxes for respondents to tell their stories, suggest changes, and upload reports or documents. This online survey asks the type of care or support provided, including “arranging/coordinating care and support, medical appointments and other help” and “helping with medication (e.g., making sure he/she takes pills, giving injections, changing dressings”). One section is devoted to transition from a hospital stay. This is a greater level of specificity than in the government survey. It also suggests that carers' responsibilities fall into both the medical and social categories.

Housing receives considerable attention in the Carers UK survey, but not in the government survey, nor generally in US surveys, other than a question asking whether the care recipient lives with the caregiver. The Carers UK survey asks about the respondents' current housing situation, including the option of renting a home from a local authority, and whether the current home is adequate for the ill person and the carer's needs. Several questions in this survey suggest that waiting lists for services are a problem; one option on the housing question is “Our home is not appropriate and we are on the waiting list for local authority housing.” Another question concerns home adaptations, and one option is “We have qualified for adaptations to be made by the local authority and have been waiting for these to be made for more than 18 months.”

Technology is another important area in the Carers UK survey. The survey acknowledges that it is an advocacy tool, noting, “We're gathering evidence…to make the case for Government, public service professionals and technology providers to open up access to these important technologies.” The survey questions ask about current use of technology, such as a fall detector or personal alarms; and it further asks about the impact on the carer's life, including positive and negative results.

Other domains include finances, community supports, and employment.

Implications for the US

It would be difficult to replicate the UK experience, and surveys alone will not reach the full range of American caregivers. The surveys are long and in English only. Neither UK survey is a representative sample; the responses come from already identified carers and service providers. Online surveys limit respondents to computer users.

At a minimum, the Centers for Disease Control and Prevention (CDC) could make additional use of its public health surveillance system called the Behavioral Risk Factor Surveillance System (BRFSS). All states are required to ask a representative sample of residents a series of core questions; they can include some optional modules; and they can ask questions that they want answered. The optional modules add costs to the states. The questions are administered by phone (landline and cell phone). The eight-question caregiver module is optional. In 2015 24 states chose this option, and others could be given incentives to include the caregiver questions, or the module could be made part of the core questions. Although the information gathered is minimal, it could form the basis for a national strategy. Further, states should move beyond Medicaid to look at middle-income families who are struggling to provide care, maintain jobs, take care of children, and fulfill all the other responsibilities they have.

Carers and caregivers may be divided by language, as Wilde and Shaw observed, but they share similar needs. For the future, caregivers need a coherent national strategy, implemented by states to reflect local needs. As the well-known American philosopher Yogi Berra said, “You've got to be very careful if you don't know where you are going, because you might not get there.”

April 21, 2016
Focus Area
Quality and EfficiencyClinical-Community Partnerships
Family Caregiving