Saturday, August 1, 2009

(R)evolution in Alzheimer's Related Caregiving


One of my greatest fears is the day I might have to place my mother in an Alzheimer's care facility. I say might because I pray that I'll never have to do it.

I receive emails all the time from people that experience the guilt, angst, and remorse of having place their loved one in a Alzheimer's care facility that provides little care, and is a horrid environment for their loved one.

Our reader Rose LaMatt, wrote of her own nightmare experience after she placed her loved one into an Alzheimer's care facility. In Just a Word, she writes with real, raw, emotion about the myriad of feelings she experienced when moving her loved one from the first Alzheimer's care facility to a second. Reading her words were eye opening, and gut wrenching.

Sadly, its ugly out there.

It doesn't have to be that way...........

You’ll be surprised by all the activity, especially because the residents have moderate to end-stage Alzheimer’s disease or dementia. What’s going on here is amazing: nearly every one of them has a history of aggressive behavior that’s resulted in multiple expulsions from other dementia facilities and nursing homes. Perhaps what’s going on here is actually miraculous: nearly every one of them has been liberated from the nightmare of antipsychotic drugs. And virtually all of them will never be readmitted to a hospital behavior unit, a nursing home--or shackled to a restraint and left alone to die.--Laurence Harmon, et al
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(R)Evolution in Alzheimer's, Dementia, and Memory Care

By: Laurence Harmon/Kathleen Harmon/Judy Berry

Darwin, Minnesota (population 1,318) is one of hundreds of forgettable little towns scattered alongside two-lane roadways in rural Minnesota, although the Guinness Book of World Records honored the place for a while as the home of the world’s largest ball of sisal twine.

Curiously, the town bears the name of Charles Darwin, who believed that every species continuously develops--evolves--from an original primitive condition to a highly specialized state. As it turns out, the name of the town is perfectly appropriate: Meet the Lakeview Ranch in Darwin, Minnesota, the latest example of the evolution of Alzheimer’s and dementia-related caregiving.

When you visit the Ranch—and you should, if you want to see for yourself the future of caregiving—it’s what you won’t see that’s most important:
There aren’t any drug-addled residents slumbering unattended in their wheelchairs. Nobody’s lying in their own waste or begging piteously for help. You’re probably thinking about the past, and unfortunately, the prevalent, evolution of “caregiving.”
What you’re likely to see at the Ranch are a dozen or so residents, gently assisted by half-a-dozen caregivers.
They're playing Bingo in the spacious Great Hall, or maybe they're baking sugar cookies, or, best of all, they're petting the Shetland pony, one of the llamas, assorted chickens, a rabbit, the miniature donkey, or Maggie, the aging Black Lab with a thyroid condition. The residents could be involved in an outdoor activity--perhaps kite flying, bubble blowing, or listening to music in the park. Or there might be a watermelon feed underway in Downtown Darwin, or rides in a golf cart, a pontoon boat trip, or listening to a visiting Mennonite singing group before dinner.
You’ll be surprised by all the activity, especially because the residents have moderate to end-stage Alzheimer’s disease or dementia.

What’s going on here is amazing: nearly every one of them has a history of aggressive behavior that’s resulted in multiple expulsions from other dementia facilities and nursing homes.

Perhaps what’s going on here is actually miraculous: nearly every one of them has been liberated from the nightmare of antipsychotic drugs. And virtually all of them will never be readmitted to a hospital behavior unit, a nursing home--or shackled to a restraint and left alone to die.

The Lakeview Ranch care model.

Judy Berry runs the Ranch. Right away when you meet her, you’ll experience the intensity, the passion she has for her work. You’ll find out why she got started in the business: Her own mother, increasingly addled, angry and abusive as the Alzheimer’s progressed, was dumped a dozen times by nursing homes, finally dying, drugged and helpless, strapped into a wheelchair, begging Judy for help.

That agonizing personal experience is Judy’s inspiration. She quit her job as a sales rep for a barbecue rib company, and at age 55, with no formal training, spent her last dollar to buy a piece of land where she built her first care center. Driven by the memory of her mother’s struggle with the disease and the circumstances of those last years, Judy was determined to provide a caring environment that would meet not just the physical needs of her residents, but their emotional and spiritual needs as well.

The Lakeview Ranch approach is nothing less than the realignment of the traditional biomedical model to a person-centered communication model.
The biomedical program considers abnormal behaviors to be products of a diseased brain that require treatment with behavior-changing medications, hospitalizations--and possible eviction from the facility. The latter, in contrast, regards these behaviors as a type of communication that should be explored, then followed by validation of feelings and emotions, which will ultimately address the unmet need.
The disease of Alzheimer’s and the more than 140 types of dementia prevent their captives from communicating their needs by normal means. Frustrated and finally enraged that they can’t get help—think of a two-year old with a strep throat--they react as the two-year old does: They lash out at their environment. Their loved ones, confused and abused, become their victims.

Judy’s experience proved that, first, these sufferers are trying to express their unrealized needs, and second, that the customary nursing home response—bombarding the behavior with torrents of antipsychotic medications—is clearly wrong. Instead, discovering and then fulfilling needs is Judy’s caregiving imperative. As she puts it, “You shouldn’t look at the disease as the cause of the behavior. Look at yourself, your approach, and understand why the behavior exists.”

Simply put, here’s the Lakeview Ranch care model: by pinpointing the underlying cause of the challenging behavior, the caregiver is able to satisfy the unmet need and subdue the behavior.

"Getting to Know Me."

The disease loots its victims of their ability to reason and communicate, which obstructs the caregiver’s discovery of the need. The caregiver is dealing with the two-year old with strep throat who is also incoherent. Fortunately, there is a stockpile of historical information that can be investigated to unearth the reason for these outbursts.

Here again, Judy's insights delivered gold.

The preadmission process at the Ranch inquires deeply and probes thoroughly into the prospective resident's background. Experienced caregivers methodically interview family members to develop a detailed written biography of the prospective resident.

Using this tool, all caregivers at the Ranch become familiarized with such diverse subjects as the family composition, specifics about the first house and neighborhood, along with the family's most memorable times, celebrations, and favorite pets; the individual's school memories, special meals, details of the first date, marriage and family, family traditions, special friends, daily routines, personal capabilities, religious beliefs and hobbies, military and employment history, and much more.

This detailed inquiry facilitates what is essentially preventive treatment that will be used to defuse potential aggressive behavior. Here are some examples:

  • David R., an 87-year old farmer, used to milk his cows at the same time twice daily. He becomes agitated and combative at 5:30 in the morning and 3:30 in the afternoon. His caregiver calms him by holding his hands and reassuring him that Milo, the hired hand, "Fed the cows and finished milking them. Don't worry; everything is okay at the farm."

  • Emma C. spent many of her 86 years doing hard domestic labor for her large family. She sometimes becomes agitated and vocal, moving her arms rapidly and rhythmically. Her caregiver calms her by thanking Emma for "Doing so much work for our family and washing all our clothes."

  • Patrick W., a devoted fan of the Minnesota Vikings football team, becomes uncooperative either shortly after noon or late in the evening. His caregiver realizes that these incidents occur at about the time when a football game would be over, and comforts Patrick by reassuring him that "The Vikings won! They beat the (Detroit Lions/Chicago Bears/Green Bay Packers) again!"

  • Marilyn E. grew up in a community in which both English and German were spoken. She becomes agitated and loud from time to time. Her caregiver calms her by approaching her closely and whispering German phrases.

  • Dorothy M. had been a pediatric nurse at a nearby hospital. She has difficulty sleeping almost every night after midnight, the hours when she had been on duty. Her caregivers believe that Dorothy might be reliving the times when the babies had been crying or even gravely ill or dying at the hospital. A relative of one of the residents gave an extensive doll collection to the Ranch; the caregivers select an especially lifelike doll to give to Dorothy and tell her to "Watch the baby. Make sure she doesn't turn blue. She's just fine as long as she doesn't turn blue." Problem solved. Indeed, several residents of both sexes find comfort by holding, caressing and whispering to the dolls.



Most of the residents grew up in very religious environments, often on farms in the area, and as a result have histories of loyal church attendance. The Ranch responds by providing frequent Bible readings and clergy visits, a recognition that as they approach the end of life, people with dementia often have intensified spiritual need. They increasingly retreat into the past and relive old, unresolved issues. The validation of their feelings and the emotional and spiritual support that the Ranch offers at this time helps to reduce anxiety and fear.

The future of the Lakeview Ranch model of care: Can there be dignity and respect in Alzheimer’s and dementia care?

The Lakeview Ranch model is the absolute opposite of the traditional paradigm for Alzheimer’s and dementia care giving.

The Lakeview Ranch approach is specifically intended to prevent—or significantly reduce—behavioral hospitalizations and ineffective nursing home admissions of those who suffer with this disease.

Indeed, this model specifically focuses on “prevention,” employing person-centered, proactive disease management, rather than institutionalizing and effectively warehousing this population.

In macroeconomic terms, the adoption of the model would fundamentally redirect governmental and other funding for this type of care to the front end of the caregiving continuum to provide the financial foundation for proactive disease management, high staff-to-patient ratios, and specialized staff training.

In organizational terms, the model organically revolutionizes the prevalent institutional prototype, and does so successfully.

Initial studies conducted by the gerontology department of St. Cloud State University found that the model reduces behavioral re-hospitalization of Lakeview residents by more than 90 percent.

In human terms, the model represents an aggressive approach to reducing depression, agitation, and verbal and physical aggression in this population, with a corresponding reduction in suffering for the patients and their families.

The future of the Lakeview Ranch care model: Will there be dignity and respect in Alzheimer’s and dementia care?

There are obvious formidable barriers to the widespread replication of the Lakeview Ranch care model.

For example, powerful opposition would be expected from nursing homes, healthcare insurers and pharmaceutical companies; indeed, their influence is now on display during the extended congressional examination of universal healthcare legislation.

The current delivery methodology for Alzheimer’s and dementia-related care is intentionally structured according to the “win/win/lose” archetype that is unfortunately characteristic of the American healthcare system. Pharmaceutical giants and nursing homes are the overwhelming winners, while the vulnerable and helpless are inevitably steamrolled by the system. Consider:

Approximately 35,000 companies that operate 70,000 U. S. nursing care facilities post estimated combined annual revenues of $130 billion.

An analysis of nearly 16,000 nursing homes found that for-profit homes, which constitute two-thirds of the total, are 40 percent more likely to provide inferior care than their non-profit rivals.

Nursing home profitability depends on efficient operations, because revenue per patient is largely controlled by Medicare and Medicaid. The major difference between for-profit and non-profit facilities is that the non-profits are staffed, on average, by 31.7 percent more licensed nurses.

Atypical antipsychotic medications have received FDA approval for the specific treatment of schizophrenia and bipolar disorder.

An estimated one-quarter to one-third of nursing home residents—70 percent of whom have been diagnosed with dementia--are dosed with antipsychotic medications, primarily “atypicals.”

Risperdal is an atypical antipsychotic medication manufactured by Johnson and Johnson, a firm that reported world-wide sales of $24.9 billion in 2008. Of that total, $4.7 billion, or 19 percent, was attributable to Risperdal sales. Risperdal carries the following warning label:
“WARNING: INCREASED MORTALITY IN ELDERLY PATIENTS WITH DEMENTIA-RELATED PSYCHOSIS.


Elderly patients with dementia-related psychosis treated with antipsychotic drugs are at an increased risk of death . . . of between 1.6 to 1.7 times the risk of death in placebo-treated patients. . . . RISPERDAL® (risperidone) is not approved for the treatment of patients with dementia-related psychosis.”

Zyprexa is another atypical antipsychotic medication. It’s manufactured by another drug giant, Eli Lilly & Company, the ninth-largest pharmaceutical firm in the world, with world-wide sales of $17.6 billion in 2008; $4.7 billion, a hefty 27 percent of the total, represented Zyprexa sales.

On January 15, 2009, Eli Lilly agreed to pay a stunning $1.415 billion to resolve allegations that it promoted the drug for the treatment of, among other conditions, dementia and Alzheimer’s dementia, despite the fact that the FDA had never approved the drug for these conditions.

Sales of atypical antidepressants rose from $8.4 billion in 2003 to $14.36 billion in 2008.

These facts illustrate the power and reach of the entrenched American institutions that are altogether invested in the prevalent archaic biomedical model.

A successful and humane alternative, the Lakeview Ranch model, could serve the “grey tsunami”--American Baby Boomers who will soon need senior care, and who deserve a system that will provide them with dignity and superior care, as well as emotional and spiritual support, throughout their final journey.

Detailed information about the Lakeview Ranch is available at http://www.lakeviewranc.com, or by calling the facility at 1.800.546.5175.

The DementiaCare Foundation assists all seniors needing specialized dementia care, regardless of financial ability. Information about the foundation, a Minnesota 501(c )(3) Public Charity, is available at http://www.dementiacarefoundation.org.


Bob DeMarco is an Alzheimer's caregiver and editor of the Alzheimer's Reading Room. The Alzheimer's Reading Room is the number one website on the Internet for advice and insight into Alzheimer's disease. Bob taught at the University of Georgia, was an executive at Bear Stearns, the CEO of IP Group, and is a mentor. He has written more than 700 articles with more than 18,000 links on the Internet. Bob resides in Delray Beach, FL.

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