Friday, September 18, 2015

The International Carers Conference: Why Don’t People Get It?

Couldn't resist sharing this photo of a tram in Gothenburg

I promised a posting about the International Carers Conference, which was held in Gothenburg, Sweden from September 3rd to the 6th.  Carers is the term adopted for “caregivers” in Britain and most of Europe.

There was a high level of enthusiasm and excitement among the people who attended the conference.  Presentations included research on carers, but the main emphasis was on innovative programs and public policy initiatives to support carers.  It was particularly striking for me to hear about the impact that carers’ organizations have had in Europe.  Legislation has been passed in Sweden and Britain that recognizes the rights of carers and mandates services.  Other countries are moving in similar directions.  As I mentioned in my previous blog, Queen Silvia of Sweden gave the opening talk at the conference.  She has been a long-time advocate for carers in Sweden, having herself cared for her mother, and she gave an articulate speech that talked about the value of caregiving to society and the need to support carers.

At the same time delegates and speakers bemoaned the cuts in services to carers that began with the 2008 economic crisis and continues through today.  The cutbacks have occurred even in those countries like Sweden and Britain that have passed laws to support carers.  At least carers’ groups have their foot in the door, and hopefully funding will be restored in the future.

The US situation is somewhat different.  We don’t have much of the way of national programs of caregiver services to start with, but there have been cutbacks anyway.  In what has become all too common an occurrence here, those cutbacks have affected programs for the most needy—people with low incomes who qualify for both Medicare and Medicaid.  These cutbacks have been made at the state level, which pays a portion of Medicaid.  The cutbacks in part reflect the economy, but are also fueled by politicians who believe government funds should not be used to help anyone.  Or at least anyone who doesn’t have good connections.  Governor Walker of Wisconsin is spending millions of state dollars on a new sports arena for the Milwaukee Bucks while cutting back funding for public services and education. 

The case for a robust, national program that supports caregivers is obvious.  The National Alliance for Caregiving and the American Association of Retired Persons (AARP), which have emerged as the main advocates for caregivers in the US, have conducted a series of ongoing studies that describe how much family care is going on and the social, economic and health consequences of that care.  In their 2015 survey, they report that 18% of adults in the US provided care to a family member in the past year for “a medical, behavioral, or other condition or disability.”  That translates into 43.5 million caregivers.  These caregivers are helping children, spouses, parents and other family members.  We also know from extensive research that providing care is often stressful and takes a toll on caregivers’ health and emotional well-being.  The economic value of their unpaid care has been estimated in a 2013 report by AARP at 470 billion dollars.  Yet government largely stands aside and does not offer the support that will prevent caregivers from burning out and turning to more expensive, institutional care. 

We and many others have long advocated providing services like adult day care or other forms of respite to caregivers to help them continue giving care at home longer, and to reduce the risk that their own health will suffer from the stress involved.  There are notable programs across the country that assist caregivers, like San Francisco-based Family Caregiver Alliance.  But unlike Sweden or Britain or many other countries, we don’t have a national commitment or national strategy.  As a result, most caregivers in the US receive little or no help.  Queen Silvia talked eloquently about the economic costs of caregiving, but our politicians have their heads in the sand when it comes to the growing numbers of people who need help and who give help.

One way to approach the problems faced by caregivers as well as the people receiving care would be a national long-term care insurance program.  Congress runs the other way when that idea comes up, but there is an interesting model that could possibly gain support in this country.  The model comes from a surprising place – Japan.  The program, which was implemented in 2000, includes coverage of community services designed to support caregivers and help them continue care at home.  The unique feature is funding—the tax that supports the program goes into effect at age 40—a time in which workers are likely to have a secure income and when they are likely to be aware that they may need help for parents and for themselves in the future.  Research by Dr. Yumiko Arai has suggested that long-term care services under this program have been helpful to caregivers in lowering their burden.

Over the years Judy and I have met many remarkable caregivers.  Providing the resources they need to continue their work would recognize the contributions they make to our society as a whole.

You can access the report of the most recent National Alliance for Caregivers/ AARP Survey, Caregiving in the U.S. 2015,  at:


  1. Thanks for the great post Steve. I have been following your blog but this is my first time to comment. I do think we could learn a great deal from other countries that provide more formal services. Great that you are getting to travel and learn so much about this. I teach an online graduate course on Family Caregiving in Aging and Chronic Illness. I'll be teaching it this spring and hope to add material on this topic. Best to you and Judy.

    1. Bill I would be very interested in your online graduate course on Family Caregiving in Aging and Chronic Illness. Could you please email info to Many thanks, Carol Nelson