Three million of America's 4 million people with Alzheimer's are cared for at home, typically placing a great burden on those who provide the care. Now, however, research and increasing support are combining to make this difficult task at least a bit easier.
Helping the Helpers:
Alzheimer's Caregivers no longer alone
by Peggy Eastman
The nightmare began for the Bronder family of Trumbull, Conn., in 1992 when Joachim Bronder was diagnosed at the age of 56 with an aggressive form of early-onset Alzheimer's disease.
In months, Bronder, a father with three children in college, went from being an energetic, successful engineer to someone needing help with basic tasks.
As the disease raged on, his wife, Julia, then 52, was forced to give up her job to take care of him, and the family's finances slid rapidly downhill. During this time, one daughter dropped out of college to lend a hand, but otherwise the burden of care fell on Julia Bronder.
"I was desperate," she says. "He went down very rapidly. I couldn't lift him, he was incontinent, he couldn't eat."
"My only choice was to spend down our assets and put him on Medicaid," she recalls. "This was my husband of more than 30 years. Putting him in a nursing home [where he is today] was one of the most difficult decisions of my life."
Though the Bronders were younger than most who find themselves in this situation, their experience is typical of the immense burden Alzheimer's imposes on many families.
Resulting from the loss of nerve cells in the brain, Alzheimer's is an incurable disease that impairs a person's ability to reason, remember or control behavior. It afflicts some 4 million Americans, some 3 million of whom live in homes where they are cared for by family members.
However, experts are becoming increasingly aware that those who give help need help, too. They are devoting new attention and research to Alzheimer's caregiving. The result is a growing body of helpful knowledge and a widening network of support.
Caregiving is an exhausting job-- emotionally, physically and financially," Maureen Reagan, the daughter of America's most famous Alzheimer's patient, former President Ronald Reagan, has written. Ms. Reagan, a board member of the Alzheimer's Association, added, "It is not a job that anyone--however strong and resourceful--can do by themselves.
The difficulty is increased when the caregiver has other responsibilities. And, according to a recent survey by the Alzheimer's Association and the National Alliance for Caregiving, that is often the case. The study found that almost half of Alzheimer's home caregivers work full time and a third have children or grandchildren under the age of 18 living with them.
Yet there's good news, too: Those who do provide home care have increasing resources on which to draw, including respite programs, support groups, and a wealth of advice on how to cope with Alzheimer's patients and make daily living easier.
Strategies for home
Lisa P. Gwyther, director of family support at the Duke University Center for the Study of Aging and Human Development, says that while there is no one "right way" to care for a person with Alzheimer's, research has demonstrated the value of some coping techniques.
A sound strategy, she says, is one based on a recognition that the patient can't change and that it is the caregiver who must adapt.
"In general," she says, "many troublesome behaviors are expressions of discomfort, fear, fatigue and frustration with a world that no longer makes sense." By dealing with these emotions in a loving, nonconfrontational way, she says, caregivers can help calm their loved ones--and ease their own burden.
Frances Oakley, an occupational therapist and clinical researcher at the National Institute on Aging of the National Institutes of Health, says helping the patient get started on activities, breaking his or her activities into smaller tasks and using adaptive equipment are useful techniques.
Oakley, who has written a guide for caregivers, "Understanding the ABCs of Alzheimer's Disease" (American Occupational Therapy Association, 1993), says helping the patient start activities is especially important, because Alzheimer's is notorious for sapping initiative.
"They [the patients] know that they want to make a cup of instant coffee, for example, but don't know how to make the first move," she writes in her guide. A caregiver could start the task by heating up water, she suggests, and the patient could finish it by spooning in the instant coffee.
Breaking activities into smaller tasks might consist of letting a patient who liked to cook--but can't now prepare a whole meal--cut up vegetables or mix ingredients.
As an example of adaptive equipment, she points to t he "spork," a combination spoon and fork that can eliminate a possibly confusing choice about which utensil to use.
Oakley says that visual cues such as calendars and written messages (for example, "turn off the stove") can also help. Modifying the home environment includes safety issues such as locking up medications, removing matches and flammable liquids and installing deadbolt locks on exit doors to prevent wandering.
In addition to what research is teaching caregivers, invaluable information is available through Alzheimer's support groups that bring together family caregivers. The Alzheimer's Association has more than 200 chapters across the country, and many offer support groups. In addition to assuring members they are not alone, support meetings enable members to learn from each other.
Learning from experience
Bill Kays, 67, of Vienna, Va., tells a typical tale. The retired labor relations executive was devastated when his wife, Pearl, came down with an early-onset form of Alzheimer's years ago, when she was in her 50s.
Looking back on that time, Kays says, "I thought I had a stressful job, but didn't know what stress was until I got into caregiving." Pressured by his daughter, he finally attended a support group meeting. "For the first time I felt that understood. ... I broke down and cried like a baby."
Were it not for the group and the chance it gave him to air his problems, he is convinced he would have succumbed to heart problems that later required a quadruple-bypass operation. He is now a support group leader himself, sharing lessons learned the hard way.
"The two most important words a caregiver has to learn," he says, "are 'So what?' So what if she wants to eat her dessert first? So what if she wants to go to bed with her clothes on? You've got to become less picky."
Like Julia Bronder, Kay eventually reached the point where he had no choice but to put his spouse in a nursing home.
On a more formal level, various studies are under way to improve the effectiveness of caregiver assistance. One such effort is Resources for Enhancing Alzheimer's Caregiver Health (REACH), a five-year, six-site project established by the National Institute on Aging in 1995. Among other things, the project is developing ways to help caregivers manage their own stress by learning relaxation and other techniques.
Researchers are finding that respite care can often determine whether a person with Alzheimer's can remain at home. Though respite programs differ, all are designed to give the caregiver a break--for example, by having an "adult sitter" visit the home occasionally. Other caregivers gain respite by having their loved one attend an adult day-care program.
Using grass-roots tactics consumer advocates are pushing for state support of respite programs, and they are having some success. Last year, for example, the legislatures of Vermont and Connecticut established such programs--the latter helped alone by the lobbying of Julia Bronder and other caregivers. The two New England states joined many others that fund respite programs, including California, Florida, New Jersey, Pennsylvania, Virginia, Washington, and Wisconsin.
New Jersey's program is representative. It includes in-home companions (adult sitters), adult day care, temporary care in licensed medical facilities, private duty nursing and short-term stays in the home of a trained individual or family. The program sets income limits that people must meet to qualify and caps services at $3,000 per person per year.
Safe Return program
In additions, caregivers might want to protect their loved one from the wandering that is common among Alzheimer's patients.
With partial funding from the U.S. Department of Justice, the Alzheimer's Association administers a nationwide Safe Return program that helps return people who stray from their homes.
Since 1993, more than 50,000 people have been registered in the program, and more than 3,700 wanderers have been returned. The program includes identification items such as wallet cards, bracelets and clothing tags; a national photo and information database; and a 24-hour, toll-free emergency line. A one-time registration fee of $40 is required to sign up.
Power of attorney
Because Alzheimer's patients using lose the ability to manage their own affairs, experts say it is critical that caregivers obtain power of attorney for their loved one.
In this legal process, a person authorizes a trusted family member or friend to make legal decisions for him or her. Most powers of attorney are "durable," meaning they are valid even after the person with Alzheimer's is no longer competent.
On the national scene, other actions are under way that promise help for Alzheimer's caregivers.
President Clinton, for example, has proposed giving family caregivers a federal tax credit of up to $1,000 a year and establishing a National Family Caregiver Support Program. The latter would provide grants to state and area aging agencies to expand services for caregivers.
Similar tax-break legislation has been proposed by Rep. Nancy L. Johnson, R.-Conn., and Sen. Chuck Grassley, R-Iowa. Observers say these measures are getting serious attention but are unlikely t be enacted this year.
State governments are also beginning to focus on caregiver needs. According to the American Council of Life Insurance, 12 states have established tax credits for long-term-care insurance premiums.
Advocates for long-term caregivers say such measures help but that additional programs are needed. They note, for example, that Medicare does not cover long-term care and that most private insurance policies with such a provision apply to institutional care, not home care.
Stephen McConnell, vice president of public policy for the Alzheimer's Association, points out, too, that home caregiving is likely to increase. For, unless a cure is found, the number of Alzheimer's patients--now at about 4 million--is expected to grow to some 14 million by 2020.
For caregiving advice and help:
Peggy Eastman is a Washington-based free-lance writer
Used by permission. Copyright © 1999 by Peggy Eastman,
from the July/August 1999 issue of the AARP Bulletin. All rights reserved.