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Prepare yourself for big new cuts in government support for elder care.  

In his State of the Union address last evening, President Obama called for a five-year freeze on a narrow slice of the federal budget. Unfortunately, programs subject to the freeze would include many that are critically important to the frail elderly and younger people with disabilities--especially those living in the community.

This is only the beginning of what will be a very difficult period. Yet it is an opportunity for communities to pull together to provide services that government may no longer offer.

The freeze would not include Medicare or Medicaid, although Medicaid long-term care benefits are already being cut at the state level. However, it is very likely that programs such as meals-on-wheels, adult day care, transportation, housing, aging and disability resource centers, and Area Agencies on Aging would all be hit by this freeze.

It is not clear exactly how the freeze would work. It could be an across-the-board cut in all so-called domestic discetionary programs. These are programs that are subject to annual congressional review, but exclude entitlements such as Medicare, Medicaid, and Social Security. Alternatively, Congress could pick and choose which programs to cut, as long as the total amount of all domestic non-entitlement spending did not rise from year to year.

Either way, a freeze will inevitably result in fewer services since demand for this assistance is growing as the population ages and the cost of services rises.

Congressional Republicans are already criticizing Obama's plan as too weak and vow to cut even more deeply into these programs. Some would return spending to 2008 levels, others to 2006 funding. However it finally works out, there is little doubt that many of the long-term care supports and services that seniors now rely upon are in line for major cuts.

With a national debt of $14 trillion and annual deficits of more than $1 trillion, there is no doubt that government spending is going to be trimmed--perhaps quite substantially.It is also likely that sooner or later, federal payments for Medicaid services will also be slashed. One can hope that an eventual budget deal will eventually include tax increases as well, which would help soften the spending blow. But in the current political environment, that is not likely--at least until after the next presidential election.

So what do families and advocates do? I believe we need to begin to look for community, non-government solutions. If transportation services are cut, we should pull together to create volunteer ride programs. Senior villages are one way to build such an infrastructure. So are more informal groups organized around neighborhoods, churches, synagogues, or fraternal organizations.

If budgets for government-funded resource centers are slashed, we should support private non-profits that pick up the slack.(Full disclosure: I serve on the board of one of these--the Jewish Council for the Aging of Greater Washington--and as an adviser to another--Caring from a Distance). 

As needs grow and government services shrink, we all face a huge challenge. But it is also an opportunity to rethink our obligations to, not only our own parents, but to our neighbors and friends. I hope we will be creative enough to take up this challenge.    

It is an article of faith among many in the elder and disability advocacy communities that aging in place is always the best alternative for someone who needs personal care. I don't believe it, and I recently heard an important panel discussion that confirmed that view.

The panel, sponsored by Washington Grantmakers, was especially interesting because the participants were all supporters of community caregiving. But they agreed that, without a strong infrastructure of family, community, and public support, it is not always possible for people to live at home. Indeed, it can often be lonely and even dangerous.

University of Florida professor Stephen Golant, who has written extensively on housing and care alternatives for seniors, reported that his research finds six major challenges to the frail elderly living at home. They include affordability, physical deficiencies of homes, lack of social supports, neighborhood changes, difficulties accessing community assistance (especially in both inner cities and cul de sac suburbs) and vulnerabilities of old age including greater risks of accidents, poorly trained family and paid caregivers, and even abuse.

Golant concluded that those most at risk staying at home are low-income, very frail, poorly educated women who are 85 or older and either living alone or with a frail spouse. This seems obvious, but these are the very people who have the fewest alternatives. For most, high-quality assisted living or even independent living are far beyond their financial means. Golant says those at most risk are not the very poor but the nearly one-third of seniors he calls "tweeners," who do not qualify for public programs but can't afford to private pay for housing with supportive services. 

Golant suggests that addressing these issues requires "changing the aging in place dialogue." Doing this will require society and families to recognize that living at home is not always the answer, and that focusing on group care may make more sense. This can mean thinking about senior villages and other naturally occuring retirement communities where care can be better coordinated and delivered much more efficiently. 

Charles Smith of the Montgomery County (MD) department of aging and disability services said that it is increasingly difficult for government to deliver the services necessary to support people aging at home. Budgets are being slashed and physical distances make it tougher to provide assistance, especially in the suburbs. Smith said that in sprawling Montgomery County, it costs five times at much to deliver a meal to a suburban house as it does to buy it. Transportation services, the single most common need for those at home, face the same difficult combination of smaller budgets and greater distances.

"We are creating expectations that you should age in place,"  Smith says, but government doesn't have the resources necessary to meet those expectations. 

Rev. Joseph Williams, executive director of Emmaus Services for the Aging, a private non-profit in the District of Columbia, added that grassroots community support is essential for people to age at home. "It can't all happpen in the department of aging," he said.   

None of this means those of us caring for our parents should not do all we can to help them stay at home, if it is appropriate. It does mean that just saying the words won't make it happen. Rather, it will require communities and families to work together to back up the sentiment with real resources, including both time and money. It is a fantasy to believe that assistance will come entirely from government, which will be increasingly strapped for funds in coming years. It will also require us all to recognize that some of our parents will be far better off in a congregant care setting.        

I spent yesterday with more than a hundred elder care professionals at the Seven Acres senior care campus in Houston. For a while they listened to me, but for much of the time I had the opportunity to listen to them. And what I heard was striking, and an important addition to the HSC Foundation's recently published study based on listening to family caregivers.

We had a wide range of professionals at this program, the 24th annual Lou Lewis Symposium in Gerontology: executives from nursing homes, assisted living facilites, and home health agencies; case managers, social workers, nurses, and maybe even a physician or two. Early in the program I asked how many had also been caregivers for their own family members. At least 80 percent raised their hands.

After I spoke, the participants broke up into a dozen small groups to come up with their own ideas for improving today's long-term care system. Not surprisingly, there were many suggestions. But there was also a striking consensus on a few broad themes.

Participants were tremendously frustrated at how poorly the system works today. Their biggest frustration may have been over the lack of communication between families and professionals and the absence of care coordination within the health system itself.

A word I heard over and over again was education. These professionals felt passionately that family members, aides, doctors, and--yes--politicians need to learn much more about how elder care works, not at a broad policy level but for individuals. The resources out there today, such as Area Agencies on Aging and Aging and Disability Resource Centers, help. But the participants thought they need to do much more. 

We talked about the need for better training for all caregivers, both family members and aides.

The participants felt strongly that community groups, local businesses and, especially, faith-based organizations need to play a greater role in caring for the frail elderly. We talked about the village movement, where seniors join together to form community non-profits to help one another. But many participants felt that churces, synagogues and other religious institutions could do much more to aid their own congregants. This assistance could come from volunteer committees who help arrange rides, friendly visits, and phone calls.

We also discused the importance of financing long-term care. This group, at least, was skeptical about whether young people would enroll in the voluntary CLASS Act. Even though this was Texas, some even felt the country would do better with a social insurance design for long-term care. But, once again, they felt that better education is the key to encouraging people to begin preparing for future long-term care needs.

I learned a lot yesterday, and I hope the participants follow up on some of their teriffic ideas. 

The other day, I had a long talk with a friend about her mom. My friend lives on the East Coast. Her mother lives in the Midwest. Mom is in an independent living apartment and recently has been falling and suffering memory lapses. The other day, mom got lost trying to drive home from her regular bridge game.  

My friend realizes it is time for her mother to get more help and they have discussed the possibility of her moving closer to her daughter. But, my friend asked, which care facility would be best?

I suggested she was putting the proverbial cart before the horse. Before we could know what care setting was appropriate, we needed to know a lot more about this memory loss. Was it early Alzheimer's? Was it stroke-related? Was it a polypharmacy issue? After all, mom is taking lots of drugs, including meds for depression, a thyroid problem, and a range of other complaints. It is not uncommon for combinations of medications to create symptoms that look very much like dementia.

Mom has a psychiatrist who treats her depression, but this doctor has little experience with elderly patients and does not seem very knowledgable about her other drugs. I suggested she see a geriatric psychiatrist--if she can find one. Once my friend learns more about the cause of her mom's confusion, she should be much better prepared to help find an appropriate care setting.

This story was on my mind as I read an article about economic importance of early diagnosis of dementia. A new study by the Department of Veterans Affairs reports that early dementia screening can reduce first year health costs by 13 percent. More importantly, recognizing Alzheimer's or other dementias can signal health providers to watch for related problems before they reach a crisis stage. For instance, checking to be sure a dementia patient is taking her meds properly could prevent a trip to the emergency room.  

The VA screening was remarkably easy. The study merely added a simple three-item memory test to its regular check-ups for patients over 70. Patients who failed the test were then given a more thorough diagnostic screening.            

We all know how tough it is to be a family caregiver. The physical, financial, and emotional strains have been well documented for years. And those of us who have cared for a family member hardly need research to describe these pressures. But a new study suggests active caregiving, as opposed to the role of passively sitting and waiting for a problem to occur, may reduce emotional stress.

The findings, by University of Buffalo psychologist Michael Poulin, suggested that the ability to help with bathing, dressing, and the like was especially important to those who share a mutually beneficial relationship with their spouse. In other words, these caregivers felt better helping when they believed they were also getting something back.

In the paper, "Does a Helping Hand Mean a Heavy Heart," Poulin does not suggest that caregiving is good for you. And he is looking the emotional well-being of caregivers, not their physical health. We know from other research that caregivers, especially spouses, may be at greater risk for poor health than others. In addition, many elderly spouses are not able to provide assistance such as transferring or bathing.

Still, Poulin's finding are important.They suggest that if a caregiver is physically up to it, taking an active role in helping a loved one can help their mood. It is worth keeping in mind as we design homecare programs.

The study involved 73 caregivers whose average age was 71.5 and who ranged in age from 35 to 89. Age made little differences in the results.

I am also curious about the consequences of this research on paid aides. My own view is that aides, just as family members, feel bettter when they can take an active role in helping a patient. Sitting on the couch watching TV doesn't seem to do any more to improve the well-being of aides than it does for family members.          

Those of us who are caring for our parents or other loved ones know how tough it is. The emotional, physical, and financial burdens are sometimes overwhelming. Bathing your father or changing his adult diaper puts both of you in a new, uncomfortable, and difficult world.

But at a Syracuse University long-term care conference I attended last Thursday and Friday, Carol Levine reminded me about the medical expertise caregivers need these days. With patients being discharged quicker than ever to their homes from the hospital or from nursing facilities, adult children and spouses increasingly are being asked to do the work that was once left to highly trained nurses. 

Carol, a former family caregiver herself and director of the Families and Health Care Project at the United Hospital Fund in New York, has a long list of these tasks, for which few caregivers are ever prepared. Among them:

Medication management: It is common these days for a senior with many chronic diseases to be taking a dozen different medications. If you've been a caregiver, you know the drill--the green pill three times a day, the blue pill twice a day with meals, the other blue pill twice a week....Worse are the sometimes deadly interactions among these drugs. With few doctors keeping track of all these meds, preventing medication disaster is up to family caregivers.

Operating medical equipment: This is work that you'd need a license to do if you were not a family member. Is the oxygen tank full, are drugs flowing freely through IV tubes, are wounds being kept clean and appropriately bandaged, are you giving injections properly? And this is the easy stuff. Some family members must do even more complicated work, such as managing complex ventilator care.

Coordinated care: This may be the toughest task of all.Somebody must make sure that all the doctors and other health professionals are on the same page. With a few exceptions (such as hospice), docs and nurses won't do it. So it is up to family members who must learn medical jargon and become disease epxerts in their own right. And keep in mind, as hard as it is for adult children to provide this complex medical care, it can be far more challenging for spouses, who may face their own physical and cognitive struggles.     

There is almost nowhere for family members to go to get this training. I have found only a handful of such programs around the country. The Schmieding Center in northwest Arkansas is a great model. But they are few and far between. 

And even if this training were available, who has time to take classes when they in the midst of a caregiving crisis? 

We all want to be cared for at home, but to make it work, family members will need the training to perform increasingly sophisticated medical tasks. And right now, there are far too few people thinking about where their education is going to come from.   

In the new health bill, Medicare is planning to pay family practice doctors extra money to organize complicated care for the chronically ill--a role known as a medical home. But as family caregivers know all too well, they are the real medical homes--and probably will be for the forseeable future.     

Receiving personal care at home, as opposed to in a nursing facility or other institution, is not possible without two things: Somebody to provide the assistance and an appropriate place to live. A southern Virginia minister has come up with a possible solution to the second.

MEDCottage is a portable, modular self-contained 24x12 dwelling that could be attached to the home of a family member, friend, or other caregiver. The home contains a small kitchen, bathroom, and bedroom, as well as high-tech assistive devices, video monitors, and a lift. It is designed to rent for $2,000-a-month. The Washington Post ran a nice article about it yesterday, or you can check out the company's own Website here.

This seems to be an ingenious solution to a vexing problem. Some people may be able to retrofit an existing space to care for a frail or disabled relative. But that can be expensive and complicated. A solution such as a modular add-on may be less costly and, in many cases, more appropriate. This may be especially true for people who need intensive personal care for a relatively short time--perhaps because they are recovering  from a severe illness or because they are dying.

Modular living spaces such as this are no panacea. They are probably not suited for very long-term care arrangements, and family caregivers need to be well-trained in how to use all the equipment.

They also face two other issues, One is money: Will Medicaid or private long-term care insurance pay for dwellings such as this? The newly-enacted CLASS Act will since will offer a cash benefit. 

The second issue, reports The Post, is the NIMBY problem. Sadly, but not surprisingly, local Virginia officials oppose the dwellings, claiming they violate zoning laws. Here is what one Fairfax County (Va.) official had to say:  

"Is it a good idea to throw people into a storage container and put them in your back yard?" said Fairfax County Supervisor Jeff C. McKay (D-Lee). "This is the granny pod. What's next? The college dropout pod?" 

This sort of thinking is beyond depressing, but it is out there. I hope that as time goes by, technology, financing and perhaps even some good common sense will combine to create some important new alternatives for people to stay at home.     

It is tough enough to age in America if you are white and middle-class. You struggle with the loss of physical vigor, social connections, and independence. You face difficult financial challenges and profound changes in your relationships with family.   

Now, imagine aging if you are out of the cultural mainstream of the U.S. Imagine if you came to America as an adult 40 years ago. Your children may be fully adjusted to life in the U.S, but you are not. Or imagine if you came here in old age to be with your now-Americanized adult children. You must face aging in a place where food, culture, and language are entirely unfamiliar. Most of all, you are living in a society where your expectations are turned upside down.

In your home country, children may have been fully expected to care for aging parents. After all, that is how you cared for your parents. But those obligations may no longer exist for your children.  

The other day, I had the opportunity to meet with a group of young journalists who are all writing about aging in these communities: Vietnamese, Syrian, Pakistani, Indian, Mexican, and even Native American. I was struck by how similar their stories are. Close-knit families torn apart by the American culture. Aging parents unable to comprehend children who have no time to care for them. Adult children who can't understand--or meet--their parents' expectations. Medical and long-term care systems that are utterly unfamiliar. 

Limited resources add to the stress. There are some programs geared to these communities scattered around the country. But they are few and often woefully underfunded. There is a wonderful Korean senior center in the Virginia suburbs of Washington, D.C. Despite the obvious benefits to the Korean community, the center struggles to remain open and today operates only two days a week.

Just as these elders face extra problems, so do their family caregivers. The National Alliance for Caregiving has taken a close look at the striking diffferences among white, African-American, Asian-American, and Hispanic caregivers. It is worth checking out.  

As we think about redesigning long-term care in the U.S., we cannot forget about these populations.    

Today, The Washington Post and Kaiser Health News jointly published an article I wrote on aging in place villages--an important element in the effort to help seniors remain in their communities. 

There are close to 50 villages now operating around the country, and at least 600 communities interested enough to send representatives to workshops held over the past year by the non-profit community development group NCB Capital Impact.

Villages come in many shapes and sizes, but there are three basic models. One, pioneered by the Community Without Walls in Princeton, N.J. is an all-volunteer group, with modest dues (just $30 for a couple). Beacon Hill Village in Boston relies on a professional staff, provides concierge services to link members with vendors (for services from home health aides to plumbers), and charges substantial dues. The third model, created by the Maryland non-profit Partners In Care, is based on the concept of time-banking. In this design, members  receive credits for their volunteer time which they, in turn, can exchange for the help of other volunteers. 

Different models may work in different communities. But the key to the success of the village movement will come from their bottom-up, community-based nature: Local people pulling together to help one another as they age. It is a powerful concept with a promising future--both for elders and for adult children caring for our parents.       

Those of us who have been caring for our parents know very well the physical toll it takes. I helped care for my dad for 18 months. And after he died, one of the first things I did was make an appointment to see my own doctor. I had never felt so exhausted and worn out in my life.

Now, an important new study describes the health effects of caregiving on workers. And the picture is not pretty. Women caregivers over 50 are twice as likely to report fair or poor health than those not caring for elderly relatives. Men are more likely to smoke. Blue-collar workers are more likely to drink. And caregivers across the board report higher rates of depresssion, diabetes, hypertension, and pulmonary disease.

Overall, the study estimates these workers cost their employers an average of 8 percent more in health care costs, or $13 billion annually. And that's on top of an earlier study that suggests absent or distracted caregivers cost their companies between $17 billion and $33 billion in lost productivity. The toll on these adult children and their employers is enormous.

The new report, called "The MetLife Study of Working Caregivers and Employer Health Care Costs" is a joint project of the MetLife Mature Market Institute, the National Alliance for Caregiving and the University of Pittsburgh.