August 2010 Archives

What do family caregivers want? What do they need?

Education and training. Respite care. And, most important, peer support.

Those are the conclusions of the HSC Foundation, which, along with several partners, organized a series of 2009 listening session to hear what caregivers had to say. They were not necessarily caregivers of parents or other frail elderly family members, Some were caring for wounded vets, others for kids with disabilities, and others were African-Americans caring for family members of all ages. HSC calls them "overlooked caregivers." Yet their message is valuable for us all.

I was struck by how important peer support was to all of these people. While assisting kids and vets can be a longer-term effort than caring for an elderly parent, the lesson applies to all families. It is important to get advice from advocacy groups and government officials, but caregivers really want to hear from other caregivers. These family members hungered for an experienced mentor who could provide both practical advice and emotional support.

This assistance will be increasingly important in a world of consumer-directed care. There are many benefitis to giving families the flexibility they need to design individualized care for their loved ones. But with that flexibility comes tremendous responsibility and a need to learn about an immensly complex system of government, non-profit, and for-proft supports. Wouldn't it be nice if these caregivers could receive some comprehensive training as well as peer support to go along with these flexible benefits. 

I understand it isn't easy to convince people to take on this mentor role. Those still caring for parents are usually overwhelmed and have little time to help others. Those whose caregiving role has ended are often exhausted and unwilling to relive their experience. But I suspect many would be happy to play this mentor role if someone asked them. The question is: Who can put them together with those looking for this critical support? 

An important new study finds that patients with metastatic lung cancer who received early palliative care both lived longer and reported a better quality of life than similar patients who had only standard cancer treatment. 

Palliative care focuses on treating symptoms, although, unlike hospice, patients may still receive treatment for their terminal disease if they wish. Palliative care also coordinates care, provides social and spiritual assistance, and helps the patient make treatment choices. 

The study, published by The New England Journal of Medicine, was done at Massachusetts General Hospital. Unlike other palliative care studies, it was base on a formal randomized trial. Some of the findings were remarkable.

While the palliative care patients often chose less aggresive treatment, they lived almost three months longer than those receiving only standard cancer care. They spent less time in the hospital, enrolled earlier in hospice, and were more likely to inform their physicians of their end of life wishes. In addition, they were less depressed and reported a significantly higher quality of life.   

The authors conclude that a key to the success of the program was early enrollment. Patients began receiving palliative care within eight weeks of diagnosis.

While this study provides important evidence of the value of palliative care, it does not mean that all patients everywhere will do as well. The Mass General program is well designed with teams of both lung cancer and palliative care specialists. The study participants were well informed of what the program was and what their care would be like.

Patients in other settings may not have these advantages. One physician who cares for many  terminal ill patients told me that many drop out of palliative care programs because medical professionals never take the time to fully explain how the program works. Some patients fear they are being written off and will receive less attention while in the program.

The study did not attempt to distinguish which elements of the Mass General palliative care program was most beneficial. I suspect, however, that its ability to manage pain was a key factor in both better mood and longer life expectancy.  

Still, this study is powerful evidence that palliative care works, especially if made available early. More hospitals and skilled nursing facilities would do their patients a great service by adopting this model. And patients with serious illnesses should begin seeking out providers who do.       

What will our growing ability to identify Alzheimer's Disease years before a patient shows full symptoms mean for the U.S. system of voluntary long-term care insurance?

The New York Times reported this week that a new test using spinal fluid can accurately identify Alzheimer's a decade before it becomes full-blown. With some patient groups, the technique--which is already commercially available--can identify future onset of the disease with 100 percent accuracy. The Times also reports that separate PET scan imagery is also being used on an experimental basis to detect early signs of the disease.

This diagnostic work is great news for medicine. These tests may become impotant steps toward eventual treatment and possible prevention of the disease. But they also promise to completely shake up our model of long-term care insurance. This is a very big deal.

To understand why, keep in mind that nearly half of long-term care insurance claims costs are for those with dementia. While Alzheimer's is only one of many memory loss diseases, it is by far the most common. 

Second. rememember how insurance works. We buy it to protect against the cost of a future bad event. I know that some people will contract Alzheimer's, but don't know if I will. So I can use the insurance to hedge against that risk. I may never file a claim, while others may end up spending far more for care than they ever pay in premiums. So insurance companies use my premiums (and the money they make investing those premiums) to pay the claims of those who do.    

Now imagine if people can learn 10 years before full onset of Alzheimer's that they are highly likely to suffer from it. Imagine, moreover, that a future genetic test can tell them decades in  advance, perhaps while they are still in the 20s or 30s. The result is that those who test positive will flock to buy insurance, dramatically increasing the amount of money carriers will have to pay in claims. They in turn will raise rates to reflect these higher costs. 

Some states have already barred insurance companies from getting results of diagnostic tests. But that will just drive up premium prices for all buyers. Knowing that the tests are widely available, the companies will simply assume that more buyers are at greater risk for getting Alzheimer's and raise rates accordingly.

Btw, the new national long-term care insurance program, the CLASS Act, will face exactly the same problem since it is voluntary. In fact, it may bear an ever greater burden. If private insurance more tightly underwrites to screen out those susceptible to Alzheimer's, those unable to buy in the market will turn to government insurance, which cannot reject buyers based on health. And that will drive up CLASS premiums.

The Stanford University Center on Longevity has just released a trove of information on the health, living arrangements, and demographics of an aging America. The study, "New Realities of an Older America" tells the story of an independent, remarkably healthy population, but one that will present unique challenges as it lives well into its 80s and, eventually, reaches frail old age.

For example, authors Adele Hayutin, Miranda Dietz, and Lillian Mitchell paint of picture of serniors increasingly living alone and in the suburbs--housing patterns that will make caregiving especially difficult.These seniors want to age in place, but providing assistance to a population that may become trapped in their own subdivisions will be a huge challenge. Caregivers battling traffic. Elders no longer able to drive to the doctor or the grocery store, or to even visit with friends. These are not pleasant images.

Yet, the current population of elders has made their opinion clear. In 2005, even among those with functional limitations, 85 percent lived at home or with a relative. Just 10 percent lived in skilled nursing facilities and only five percent lived in assisted living facilities. Even among all those 85 or older, three-quarters lived in traditional housing. 

The great challenge will be finding new ways to deliver care to this population--a challenge that will be compounded by the growing prevalence of dementia among those 85 or older. While this study finds that disability rates among the elderly are falling (a conclusion that is disputed by other research), it also estimates that the population with dementia will more than double, to nearly 11.4 million, by mid-century. 

There is lots more to chew over in this paper. Take a look at it.