Relevant unomaha.edu links:

Feature
Alzheimer's illustration
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

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

archive

October 2012 > A Closer Look at IS&T's NUCIA

October 2012 > UNO Engages Students, Community for 2012 Elections

October 2012 > National Cyber Security Month Highlights UNO Programs, Research

May 2012 > Dan McDermott Named Employee of the Year at UNO

December 2011 > Conference Tags

September 2011 > Roskens Hall: An Educator's Dream

July 2011 > Arts and Sciences Hall: UNO's Cornerstone

June 2011 > The ABCs of the Alumni House: From Adolf Storz and Mary Shirley to William H. Thompson

June 2011 > The Strauss Performing Arts Center: Making Music for Decades

May 2011 > The Durham Science Center: Theory Put Into Practice

May 2011 > The Gene Eppley Administration Building: Philanthropy at Work

April 2011 > Milo Bail Student Center: From Snack Shack to Student Center

April 2011 > UNOCCC: Twenty-Five Years of Caring

March 2011 > UNO's Libraries: A History

March 2011 > The Henningson Memorial Campanile

February 2011 > Mammel Hall

February 2011 > The Sapp Fieldhouse

January 2011 > Heydays of the Hayden House

December 2010 > UNO Faculty/Staff Earn WELCOM Light of Wellness Team Award

October 2010 > New children's financial literacy book supported by UNO alumni

August 2010 > Anna S. Forman Commencement Remarks

May 2010 > John Treinen Commencement Remarks

March 2010 > My Ties and Cliff Hillegass

January 2010 > Megan Schuster Commencement Remarks

December 2009 > Man Killed by Pheasant

November 2009 > New Molecular Modeling Lab Key to Chemistry Research Work

September 2009 > Midlands Voices: Goals of liberal arts college remain vastly important

September 2009 > Technology and Term Papers – A Photo Essay

May 2009 > USSTRATCOM Commander Hears UNO Intern Ideas on Cyber Security, Global Stability

March 2009 > Early Usage of the Kerrey Bridge: Some Empirical Findings and Thoughts on the Future

March 2009 > The End of an Era - UNO's Public Intellectuals and the Omaha World-Herald, 1997-2006

January 2009 > Going Green on Campus: Kathy Hartle Evokes Her Recycling Charge at Work

October 2008 > Zero to 65 in 80 Semesters

October 2008 > Embracing tests UNO should be praised for bucking establishment, scoring well

September 2008 > H.RES.1372: Celebrating the 100th

September 2008 > UNO Researcher Spotlighted

March 2008 > Culture on Campus

February 2008 > In Her Own Words: Technology is crucial to spurring growth

December 2007 > Pacific Street Memories

November 2007 > WISE Women

October 2007 > Vincent Empowers Teachers, Students With Technology

September 2007 > A Model of Success: UNO-Western Hills Partnership Thrives at Six Years

August 2007 > Orientation Leader Represents UNO with Exuberance

August 2007 > In His Own Words: On Summer School

July 2007 > Changing Faces

June 2007 > MVHC @ 50

May 2007 > In His Own Words: My Fulbright Year in Leipzig

February 2007 > At Your Service

December 2006 > A Job Well Done

September 2006 > Australian Finches Aid UNO Professor's Research

July 2006 > Finding His Way

May 2006 > Calming the Anxious

April 2006 > The Kid's Doing All Right

March 2006 > Shot of a Lifetime

March 2006 > Going for Four

February 2006 > Standing Tall with Sierra

January 2006 > In-Your-Face Geology

January 2006 > Religion Meets Film

January 2006 > Finding a Home Port

December 2005 > Man of the Cloth

November 2005 > Volunteer Field Work

November 2005 > Charting the Unknown

October 2005 > Developing Business Overseas

October 2005 > After The Storm

September 2005 > Building Better Officers

September 2005 > Saving the Planet

August 2005 > Making the Abstract Tangible

August 2005 > Helping Neighborhoods Help Themselves

July 2005 > Improving Health through Technology

July 2005 > Reading the Signs

June 2005 > Small Steps to a Better Life

April 2005 > Women's Walk Brings the Benefits to UNO Student-Athletes

April 2005 > Honest Art

March 2005 > Sharing The Wealth

March 2005 > Engineering His Own Masterpiece

February 2005 > Native Daughter, Native Dreams

February 2005 > Puck Stops Here

January 2005 > Stressing the Familiar

January 2005 > Connecting the Community

January 2005 > Ticket to Cooperstown

December 2004 > Spirit of the Season

December 2004 > Nicholas Stergiou: Research in Motion

fall 2004 > Alzheimer's: Caring for the Caregiver's

fall 2004 > Part of the Heart & Soul of Our Community: A message from Chancellor Belck

fall 2004 > David Hawk: All In

fall 2004 > Anadelia Lamas: Planting Roots

fall 2004 > Dean Olson: Assessing the Threat

fall 2004 > Student's Wireless Application Earns Him $25,000 Price from Microsoft

fall 2004 > Tom Warren: From the Chiefs to the Chief

fall 2004 > UNO Theatre Graduates Start Companies in Their Community

fall 2004 > Host Families Provide Welcoming Environment for Afghan Guests

fall 2004 > CADRE Project Celebrates 10 Years of Preparing Effective Educators

fall 2004 > Business Owner Raises Awareness, Funding for Real Estate Program

fall 2004 > Media Executive Chooses Omaha as Place to Build a Career and a Life

fall 2004 > UNO Partners with Metro, Takes STEP to Grow Science-Related Degrees

fall 2004 > Art Meets Technology in PKI's Student Multimedia Lab