Who Will Care for the Elder Orphans?
by Richard A. Sherer
| Geriatric Times |
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January/February 2004 |
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Vol. V |
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Issue 1 |
A lot of elders are outliving their caregivers and outpacing their income.
--Charles A. Cefalu, M.D., M.S.
Elder orphans. It's not a term you're likely to find in the literature. At this point, older adults with neither family nor extended family resources barely make a blip on the health care radar screen, but they represent one more phenomenon of the baby boomer generation, with its low birth rate and increased longevity.
"I hadn't heard the term until I got a call from a reporter a while back," Charles A. Cefalu, M.D., M.S., told Geriatric Times. Cefalu is chief of geriatrics at the Louisiana State University School of Medicine. "It is a growing problem and will become even bigger in the next 20 years," he said. "As far as being a problem right now, you don't tend to focus on it or see it unless you have an opportunity to care for [patients] in an indigent setting. But it's a huge problem and it will expand to other, more affluent elders as the baby boomer population gets into those years."
Kenneth W. Wachter, Ph.D., chair of the department of demography at the University of California at Berkeley, in an interview with GT, estimated that the number of Americans between the ages of 70 and 85 "without a living spouse, without any biological or stepchildren and without living siblings or half-siblings" will total more than 2 million people by the year 2030.
"That group will represent about 4% of the non-African-American population and about 5% to 6% of the African-American population," he said. "It is not a negligible proportion of the whole."
"We know from epidemiological studies that after age 80, the prevalence rate of Alzheimer's disease is between 22% and 40%, depending on which study you read," Joel Streim, M.D., president of the American Association for Geriatric Psychiatry, told GT.
"At least a quarter of the people in that age group have significant clinical cognitive impairment. Many are living alone after the death of a spouse--the spouse suddenly disappears--and they can't fend for themselves. That cognitive impairment is a big part of the problem," Streim said.
Cefalu, who is president of the Louisiana Geriatrics Society, has an intimate connection to the problem that goes beyond his official or professional duties. "We have a friend of the family whose wife is deceased. He has no children, except for a daughter who lives in England. She's hard to contact. He has a friend who lives 15 miles away in Mississippi, but [that friend] doesn't have the authority to make any decisions for this man.
"The person has mild Alzheimer's disease, but he's still competent. He's in a Medicare HMO, takes five or six prescription drugs, and is receiving limited physical therapy for a hip fracture. He wears a lifeline buzzer that costs him $30 a month. It's going to get worse for him. Right now, he gets one meal a day with the senior citizens group. And his round-the-clock help left a week ago," Cefalu concluded.
Seattle psychiatrist Ronnie S. Stangler, M.D., told GT that she has a patient in similar straits. "He's 85 years old. He's outlived his wife. One daughter died in a fire a few months ago, and his only other daughter was just diagnosed with breast cancer. If something happens to her, he won't have an advocate. Except his psychiatrist."
"Every physician I know has two or three patients like that," Cefalu further explained. "They're just sitting on the fence, waiting for the shoe to fall. These are the kinds of issues that the primary care physician doesn't do very much with, because time and economics don't allow them to get involved the way a geriatrician does. And a geriatrician can't do much, because circumstances don't allow it. These are psychosocial issues. If you could hire a case manager to deal with them, the patient would be better off, but Medicare won't pay for a case manager."
Isolation seems to be a hallmark of the current era. Bruce G. Rosenthal, a spokesperson for the American Association of Homes and Services for the Aging, pointed out in an interview with GT that, at present, "as many as 60% of nursing home residents are estimated to have no regular visitors." He also pointed out, "Home care is increasingly the long-term care option of choice, so being an older adult without close relatives in the future won't necessarily lead to the frequency of nursing home admission that it might once have." Rosenthal added, "We need to pay much closer attention to the social needs of growing numbers of seniors aging in places without family or significant others close by."
Historically, intergenerational ties meant that elders had children and grandchildren nearby--sometimes in the same home--to help them through the last years of their lives. Dale A. Lund, Ph.D., a professor at the University of Utah Gerontology Center, told GT that older individuals today shy away from becoming a burden on their children. "In the 18 to 29 years age group, 53% of our sample said they thought it was a good idea for older people to share a home with their children," Lund said. "With increasing age, the percentage gets smaller. As people get older, they have a decreased desire to have contact with their family, at least in the same home. At age 80 and over, only 21% said they would want to live with their children or grandchildren."
Lund added, "It wasn't uncommon for older subjects to say that their spouse's death reminded them of their own frailty and that they hoped not to have to move in with their kids. Most of them expressed a desire to remain independent, which runs counter to the fact that you'll probably become increasingly dependent as you get older. They hoped to retain their dignity and maintain the same pattern of behaviors as they get older, which is difficult when you live with other people."
Lund also remarked that divorce is another factor increasing the isolation of older adults. With roughly half of U.S. marriages likely to end in divorce, the number of people without family connections may increase. He followed couples who divorced late in life and found that only about 8% remarried within five years. "It was a small sample," he cautioned, "and they were all in the Salt Lake City area, which probably has a lower divorce rate than the rest of the country."
For elderly subjects, widowhood brings on loneliness and what Lund termed "social death, the extinction of long-term relationships, which comes before biological death."
In addition, a sense of helplessness can often overwhelm a surviving spouse. "After loneliness, the second greatest problem for widowed elders was managing the ordinary tasks of daily living--simple things from knowing how to use a microwave oven, doing home repairs, even balancing checkbooks--that were typically handled by the deceased spouse. It becomes a downward spiral for some people, especially if they don't have a strong support network. They don't learn these skills. When that network shrinks, the problems escalate and become fairly serious. It underscores the importance of learning how to do things. Sometimes they experience embarrassment for not being skilled enough to do these tasks."
"You also have the phenomena with the 'young-old,'" said Streim. "Take a 60-year-old individual with mild mental retardation or other disabling conditions who has always lived with a parent. These people are living longer now. Down's syndrome individuals used to die in their 20s or 30s. Now they're living into early old age--60 to 75--and are really not accustomed to living independently in the community when their parents die. You have a set of much older orphans who really don't have the resources to manage in community. They're isolated for the first time at a late stage of their lives. These people will require institutionalization unless they can get services at home. We don't have good epidemiological data to indicate how many people with these cognitive and physical disabilities are living into old age, but I have seen quite a number."
Streim noted that concern about leaving aging children who are unable to fend for themselves "also has an impact on aging parents, who may be in the old-old category. Many of them, as they realize they will die soon, start to worry about who's going to take care of their son or daughter, who has never married and lived into his or her adult years. As they plan for their own short years, they also have to take into account their older disabled child. That creates a lot of stress for these people in their 80s and 90s who are still parenting."
Not all elder orphans are completely alone. Many of them have family members who are located far away and not easily reachable, like Cefalu's friend. "There's a growing need for 'distance care managers,'" Lund said. "And it's even greater if the parent begins to develop dementia."
"There's another thing to consider," said Streim, who serves as associate professor in the section on geriatric psychiatry at the University of Pennsylvania and at the Philadelphia Veterans Affairs Medical Centers. "You also have people who have lost so many of their close friends and relatives in a short space of time. Some have gone through multiple bereavements in the space of a single year. Most people can recover from a bereavement and move on, but people with cognitive impairment can't always do that. There is an interrupted grief process as a result of cognitive impairment for some older adults. We do see this clinically.
"People with dementia have more trouble processing loss," Streim added. "In the more advanced cases, the person wakes up in the morning and forgets that the spouse is deceased. They may go around looking for them. You see this a lot with multiple bereavements that are complicated by clinical depression, [where] people have problems with poor appetite, weight loss, insomnia. If they're already socially isolated, or if they're depressed, they don't initiate much social contact. They don't reach out and ask for help. These are not the kind of people who are inclined to go to a senior center."
Nearly everyone agrees that society will have to begin to pay attention to the problems of elder orphans in the next few years. "Take a senior with memory loss," said Cefalu. "It's not just about finding a place to stay, but who makes decisions on their behalf? Before they can be sent to an institution, someone will have to make a determination formally in a clinic. But who has the right to pursue a nursing home placement? It's very sticky."
"It's an invisible problem," added Streim. "Very few people are aware of it. People in health care and policy settings and those who design the resources for caregiving don't have elder orphans on their radar screen. We need to raise awareness so people start thinking about this."
The American Geriatrics Society backed legislation originally known as the Geriatric Care Act of 2003 in the U.S. Congress that would have provided for a case manager benefit under Medicare. Both the House and Senate versions of the proposal languished in committees for more than nine months, until the proposal became part of the Medicare Prescription Drug, Improvement, and Modernization Act of 2003, which was signed into law by President Bush last December.