Caregivers are the Key

“Low levels of caregiver training are a missed opportunity for the health care system,” comments a research letter in JAMA Internal Medicine this week. Its authors continue: “Prior work suggests that training to better prepare family caregivers may improve health and reduce service utilization for those they assist.” In an age when health policy mavens are eager to find ways to decrease the enormous health care expenditures of “high-need” patients (also called “high-need, high-cost” patients), the potential contribution of caregivers has been sadly neglected.

The new study analyzes patient/caregiver pairs using data from the National Health and Aging Trends Study and the companion National Survey of Caregivers. Examining 1861 family caregivers of older individuals who live in the community and receive help in daily activities because of their health problems, the study confirms the paucity of relevant education in this group: only 7.3 percent of the unpaid caregivers reported receiving any training whatsoever. Put differently, 92.7 percent of family caregivers manage multiple medications, provide wound care, help with mobility and, in many cases, monitor specialized medical equipment entirely on their own. Is it so surprising that the older adults they care for have high rates of hospitalization? Their “carees,” the people they care for, typically suffer from multiple chronic diseases. If they knew how to manage acute exacerbations of those conditions—a flare of chronic obstructive pulmonary disease, for example, or a worsening of congestive heart failure; if they were equipped to deal with a predictable complication of those illnesses, such as a marked elevation of blood sugar in diabetes or the development of bronchitis in emphysema, then at least some of those hospitalizations might well be preventable. But the health care system does not routinely involve family caregivers in the ongoing treatment of frail, older adults. Only when their patients face a crisis such as the urgent need for dialysis or surgery or ICU care will physicians consult with caregivers. 

Shockingly, the new study found no association between the health status of the older adult and the degree of training of his or her caregiver. The degree of impairment, the extent of caregiver involvement, or the amount of caregiver burden, had no discernible effect on the level of support provided by the health care system. 

Also noteworthy are the age and sex of the caregivers: among the 1230 caregivers who themselves were older, two-thirds were women and their mean age was 81.8. I suspect the age distribution of caregivers shows two peaks: one composed of the adult children of the frail elders, the other made up of their spouses. 

We have to do better. We are investing energy in redesigning the health care system so as to provide better care for individuals with complex needs, focusing on the professionals who function within the system and the finances that underlie it.  Surely we could devote a little effort to the unpaid caregivers who are central to its effectiveness. A small step in this direction will be the publication of my book for caregivers, “The Caregiver’s Encyclopedia: A Compassionate Guide to Caring for Older Adults.” Look for it in late fall!

The Lifeboat is Full

Every so often I use this blog to discuss public policy issues that are of interest to older people--but not only to older people. Immigration is one of those. I have argued before that we  need immigration to address the manpower needs of an aging population: at the very least, we need immigration to recruit home health aides to help care for frail older people. It turns out that immigration is also a geriatric issue because a small but not inconsequential fraction of the immigrants are over 60--which in the countries they come from, is the beginning of old age.

So when the US president recently stated he wanted to seal the border from asylum seekers because “we don’t have room,” he failed to understand that we do need immigrants. The president also demonstrated that he failed to understand the historical basis for current asylum law when he went on to say, “I don’t think anyone has ever expressed it like that… but when it’s full, it’s full.” 

Actually, these words are almost identical to the ones of Swiss federal councillor, Eduard von Steiger, in the summer of 1942 after Switzerland sealed its borders to prevent Jewish refugees from reaching safety. “The lifeboat is full,” he announced as the pace of European deportations to concentration camps accelerated, resulting in a fate well-known to Swiss authorities. In response to popular protest, the restrictions were weakened for a time, only to be re-instituted in December, 1942. While individual Swiss citizens continued to defy the rules, at least 20,000 Jews who managed to make their way to Switzerland in the increasingly perilous world of post-August, 1942 were turned away. Their fate was almost certain death.

It was because of this ignominious closing of the border to refugees during World War 2 that the Geneva Convention Relating to the Status of Refugees asserted that no “state shall expel or return a refugee in any manner whatever to the frontiers of territory where his life or freedom would be threatened on account of his race, religion, nationality, membership of a particular social group or political opinion.” The entire Geneva Convention spelling out the rights of refugees is a reaction against the various policies of the Swiss government towards Jews during World War II--rights such as the right to work and to go to school in the host country. The US signed the amended protocol to the Convention in 1967, a protocol that extended these rights to all refugees, in all times and places.

Allowing migrants to make their case for asylum is a fundamental ethical principle. It's important to remember that those would-be immigrants include children, parents--and grandparents. It's also worth remembering that the right to seek asylum is grounded in international law. And by the way,  it's also good for today's older Americans.