by Jay Luxenberg, MD

Last month I was an invited speaker at The International Workshop on Continuum of Care for Older Persons, organized jointly by the International Association of Gerontology and Geriatrics and the Federation of Korean Gerontological Societies. As a speaker, my main concern was how much I could teach during the short time allotted for my talk.

It was only once I was attending the meeting that I realized how much I could learn. Speakers represented many countries, including several countries that offer a form of long-term care insurance universally for their citizens. Some of the speakers were instrumental in putting together the benefit package for their country. I learned of their perceptions of the trade-offs between funding with a direct tax or a premium model (similar to the premiums we charge for Medicare Part B participation).  I learned of the controversies over paying family caregivers. I learned of differences between the benefits offered by the Netherlands, Germany, South Korea and Japan, all of whom offer long term care insurance to their citizens.  I learned how they used evaluations to allocate the benefits. All of the systems shared an emphasis on offering long-term care services in the home, with an effort to avoid institutionalization. Most offered a spectrum of benefits that included what we would call group homes, assisted living and convalescent nursing home as circumstances demand. I have to say that it made me sad that a very wealthy country like the United States not only doesn’t offer such a benefit but also that it seems so far from possible in the near term for our political system to tackle even considering offering a solid long term care benefit package.

I wondered why it seems beyond our reach – beyond our political will to offer long term care when necessary to our citizens. Of course, it was pointed out to me that for the other countries that do offer such a benefit, usually the combined cost of their universal health care insurance and their long term care insurance was less as a fraction of GDP than what we pay for health care alone. Yet as we do reform our health care system which already is resulting in savings, for example from the Medicare insurance system, I do not sense any strong political will to shift some of that expenditure to offering long term care. I did hear a very interesting anecdote, though. Dr. Imai Yukimichi, Director of the Wako Hospital in Japan presented a time-line on the development of the long term care benefit in Japan. He started the time-line with the publication of a book, The Twilight Years (Kōkotsu no hito), by Sawako Ariyoshi. Her book is a fiction, telling of the effect of caring for a demented father-in-law on a middle-aged woman who also was raising a family. On its publication in Japan in 1972 it was a best-seller. According to Dr. Yukimichi, it is widely acknowledged in Japan that this moving novel was a major factor in the development of a popular movement to implement a long-term care benefit. Of course, I had to buy a copy for myself. It’s long out of print here, but Amazon had an inexpensive copy. Reading it, I realized that the effects of caregiving and the limited options families have that are so familiar to us in the field are shocking to a lay readership. A well-crafted novel does have the power to initiate a change movement – for example, Upton Sinclair’s 1905 novel The Jungle sparked a movement that led to the 1906 Pure Food and Drug Act and ultimately to the formation of the FDA. Now all we need is one of the readers of The Wave to write a wonderful novel or to produce a great movie that will trigger a movement so that all American citizens can have a quality long-term care benefit to count on.