illustration by Ward Schumaker

Alzheimer's
Caring for the Caregiver's

by Sonja Carberry

It starts gradually with simple confusion and advances slowly, at times imperceptibly. Alzheimer's is a destructive but patient disease, often taking years to progressively decimate a person's most basic abilities—dressing and eating become arduous tasks while washing away all semblance of the sufferer's personality.

They who bear the disease are not the only sufferers, though. Caring for a loved one with Alzheimer's can become a seemingly endless day-into-night effort to stay afloat on increasingly turbulent waters.

Seven years before Ronald Reagan's death, Nancy Reagan called her husband's descent into Alzheimer's, "worse than the assassination." Family friend Nancy Reynolds commented that at the end stages, Mrs. Reagan had taken "responsibility for what was left" of the former president.

Ronald Reagan's death in June cast media floodlights on Alzheimer's disease. And Nancy Reagan's graceful handling of the coast-to-coast presidential funeral tossed a new wave of attention onto caregiving.

An estimated 4.5 million Americans today are afflicted with Alzheimer's, suffering through an average of eight years as the disease runs its course. Sometimes it can take up to 20 years. Common to the experience are depression, worsening illness and, for the caregiver, financial devastation. Some describe feeling that that the very person they are trying to support is unintentionally pulling them under. They send distress signals, but does anybody hear?

Tearing Down Fences

Karl Kosloski

Karl Kosloski does. In a charming old house that is Annex 24 on the UNO campus, the gerontology professor conducts research aimed at getting under the surface of Alzheimer's caregiving issues. "There isn't much you can do right now for Alzheimer's," Kosloski says, "but there is a lot we can do for families." Sitting in his second-story office, Kosloski navigates several topics into as many different directions, pausing when his audience appears in danger of being lost in the wake of academic speak. At that point, Kosloski reels in the listener with concise to-the-pointers. Two favorites: "Planning is often done as a byproduct of the circumstances you're in," and, "Truth is a negotiated process."

UNO gerontology department colleague Dr. Julie Masters calls Kosloski's ability to hone in on his audience "a gift" and says his work is well known and often cited in the academic gerontology community. "His work is asking, 'What can we do to make this better for caregivers? What can we do to ensure their success?'" Masters says. Copiously published in academic journals, Kosloski is a frequent presenter and consultant on aging and Alzheimer's issues. In 2001-02 he received the UNO Award for Distinguished Researcher.

Not bad for a one-time fence installer.

Kosloski was raised in a working-class section of north Minneapolis, one of five children. All five pursued higher education, though Karl took the longest journey, sometimes to his blue-collar factory worker father's consternation. "He didn't really understand why it took so long, but he thought no harm could come from being in school."

Kosloski says he was an unfocused, casual student who was tossed in good directions like a fortunate cork in the ocean. He points to gentle nudges that brought him to this point, starting as an undergraduate at the University of Minnesota.

"I was about to graduate and I went to see my advisor," Kosloski recalls. "He said, 'If you want to graduate this year, you'll have to major in English or psychology,' because that's what most of my courses were in. It turns out that if you want to be an engineer—which is what I thought wanted to be—you have to take those classes."

He graduated from Minnesota in 1973 with a degree in psychology. Shortly thereafter winter came and he was laid off from his job installing chain-link fences on Interstate 94 between Minneapolis and Fargo, N.D.

He headed to Middle Tennessee State University to pursue a master's degree, mostly because that's where he got the best financial ride. He graduated from MTSU in 1975 then headed to the University of Nevada (Reno). There he conducted research on role transitions, choosing retirement planning because, "Those people are available," he says. "They've quit working, so you can talk to them." He presented some of that work at a NATO symposium at the University of Wisconsin. "It was a big deal for me at the time. Based on that work, I applied for my post-doc." That was carried out at the University of Washington.

"All of a sudden," he says, "I was a gerontologist."

Kosloski landed at Washington thanks to one phone call by a faculty member. "I'd like to think it was my own personal brilliance and sterling personality," he jokes, "but everybody gets to where they are because somebody else helped them."

He put in stints at the College of St. Scholastica, Wayne State University, the University of Kansas and the University of Kansas Medical Center before coming to UNO. He's been here 10 years, the longest he and his wife, Donna, and daughter, Lisa, have lived anywhere.

Caregiver Distress

As Kosloski describes the scope of his work, it's easy to see he's anything but underutilized. He admits to working "like an ant" and says, "Everything we do is interesting, and so I tend to get involved in a lot of stuff. I'm here every day. I work whenever I can."

In a recent project, Kosloski and colleagues cited a "theory of caregiver distress," finding that it is not just the physical and financial demands of caregiving, but the emotional slant that takes its toll. Specifically, it's being thrust into a role that is quite new to an old relationship—someone who's never been much of a swimmer would naturally be quite distressed to be suddenly responsible for keeping their loved one afloat. Conversely, finding a once-vital loved one unable to tread water is disconcerting.

"We believe it has to do with this incongruity and the role relationship you have with this person," he says. "That incongruity appears to produce distress."

An underlying current, Kosloski says, is the lack of targeted education for caregivers on Alzheimer's disease, meaning the right information at the right time. "Timing and dosage matter a lot," he says.

In a managed care study in five states done for Kaiser Permanente and Blue Cross/Blue Shield, Kosloski and his cohorts found that providing good doses of education at the right stages in the disease process helped caregivers avoid, for example, rushing to the ER with new symptoms.

"They become more comfortable because they realize these changes in fact were a predictable progression of the disease. These people improve their commitment, dedication and resolve to remain as caregivers."

Keeping the loved one at home is a huge issue for reasons personal and financial. "Caregivers don't want to institutionalize their loved ones, even if they are demented," Kosloski adds.

Caring for an Alzheimer's sufferer at home can cost around $12,500 a year. A nursing home price tag for Alzheimer's care averages $42,000 and runs as high as $70,000 or more a year, according to the Alzheimer's Association.

"The government is very interested in that because if families don't do it then society has to do it," Kosloski says. "The government spends a lot of money on programs designed to keep people in the community. Only recently did they get interested in if they did any good.

He talks of day respite care specifically established for Alzheimer's patients. "We make these programs one-size-fits-all, but that's not true. The federal government would support these programs but people wouldn't use them because it was just too hard," he says. "About one-third of the people would use the program once and never come back."

In response, Kosloski and his team developed a statistical model of "brief users." "What we tried to do is understand the conditions under which people use these programs."

They found lack of transportation or difficulty getting the Alzheimer's sufferer ready for a day at respite care often was more stressful than just staying home. Kosloski's statistically backed data will help the government make real improvements to inefficient programs.

"This university has been so supportive," he says. "I've had jobs in the past that you had to do it [research] on top of everything else if you wanted to do it at all. I think it's everybody's responsibility to contribute to the knowledge in their field. I'm not sure it's possible to be a good teacher if you're not involved in a lot of these things."

Alzheimer's in America

Her recent pleas for the acceleration of Alzheimer's research have made Nancy Reagan the unintentional poster woman for the disease. As a caregiver, her resources were admittedly plentiful. But her experience, as described in "I Love You, Ronnie," seems to speak across income and status lines.

"You know that it's a progressive disease and that there's no place to go but down, no light at the end of the tunnel. You get tired and frustrated because you have no control and you feel helpless," she wrote. "We've had an extraordinary life . . . but the other side of the coin is that it makes it much harder. There are so many memories that I can no longer share, which makes it very difficult. When it comes right down to it you're alone."

Such a feeling of isolation may be common to millions of Americans, according to Alzheimer Association statistics like these:

• 4.5 million Americans have Alzheimer's disease.
• 1 in 10 Americans told a Gallup poll they had a family member with Alzheimer's and one in three knew someone with the disease.
• 11.3 to 16 million people are projected to suffer from Alzheimer's disease by the year 2050. Since 1980, the number of Americans with Alzheimer's has more than doubled.
• $174,000 is the average lifetime cost of caring for an Alzheimer's sufferer.
• $100 billion is the national direct and indirect annual cost of caring for individuals with Alzheimer's disease, as estimated by the Alzheimer Association and the National Institute on Aging.
• 7 out of 10 Alzheimer's sufferers are cared for in the home by family and friends, who provide 75 percent of the patient's direct care. Paying for the other 25 percent costs an average of $12,500 a year, most often coming out the family member's pockets.
• $42,000 per year is the average cost for nursing home care for an Alzheimer's sufferer.
• $150 million in research grants has been award by the Alzheimer's Association since 1982.
• $650 million was spent on Alzheimer's disease research in fiscal 2003 according to a federal government estimate.

In his last letter to the country, Ronald Reagan seemed to foretell the ultimate outcome of his illness. "Unfortunately, as Alzheimer's disease progresses, the family often bears a heavy burden. I only wish there was some way I could spare Nancy from this painful experience. When the time comes I am confident that with your help she will face it with courage."

Statistics taken from sources including: http://www.alz.org/aboutAD/statistics.asp; and "Nancy Reagan: An 'extraordinary life with 'Ronnie'" 09/07/2000, www.cnn.com/2000/books/news/09/07/reagan.letters.asp

e-mail author Sonja Carberry at sonjacar@aol.com
e-mail the editor at aflott@mail.unomaha.edu