Living with Alzheimer's
Cindi Elli
Staff Writer, the Marshfield Mail


Ronald Reagan is definitely the best known person who suffers from Alzheimer's disease, which many call the most feared disease of our time. Ironically, it was the ex-president who signed the proclamation in 1983 that designated November to be National Alzheimer's Disease Month - a full decade before he made his condition public.

Since that time, health professionals and the scientific community have made inroads into understanding the devastating brain disease, but there is still no cure.

Alzheimer's disease affects about four million people in the United States, most of whom are over 65 years of age. However, due to increased longevity and the influx of the baby boomer generation "coming of age," experts predict that the number of Alzheimer's victims will soar to 14 million in the coming decades.


The disease

According to the Alzheimer's Association, Alzheimer's is defined as the most common form of dementia, a group of disorders that are progressive in their destruction of brain cells. Dementia may be the result of suffering a stroke or hardening of the arteries, and senile-dementia, a condition that affects the elderly, is quite common. Although Alzheimer's disease is also more common in the elderly, it can strike people under the age of 60.

Symptoms typically begin with difficulty remembering new information, then progress to greater disruption in memory, reasoning, judgement and eventually, personality. Alzheimer's patients may differ in their personality changes. While some may become aggressive, others may wring their hands and constantly pace the floor.

Information from the association cites that late-onset Alzheimer's now affects 10 percent of people over 65 and nearly 50 percent of those over 85.

Medical research has determined that a major feature of Alzheimer's disease is a buildup of beta-amyloid protein plaques in brain tissues. As the disease worsens, actual physical changes occur in the brain, including shrinkage of the cerebral cortex and enlargement of ventricles in the brain. The association states that a growing body of evidence is now suggesting that risk factors for heart disease - such as high blood pressure, high cholesterol, and elevated levels of a protein building block called homosysteine-- also increase the risk for developing dementia and Alzheimer's.

The American Health Assistance Foundation (AHAF) is a nonprofit organization dedicated to funding research and education on age-related and degenerative diseases - especially Alzheimer's. The foundation has found that due to recent improvements in diagnostic tools to identify a condition called mild cognitive impairment, which can be a forerunner to Alzheimer's, early identification of at-risk patients has come a long way.

And, it is important for doctors to be able to treat the disease early on, as today's drugs work best to slow the process of brain deterioration when administered at the earliest stages.

AHAF suggests that at-risk patients make lifestyle choices - like engaging in regular physical and mental exercise and lowering cholesterol - that will significantly lower their risk of developing the disease.


Recognizing and diagnosis of Alzheimer's

Symptoms are not always apparent to the early-stage Alzheimer's patient, nor at first to their family or close friends. As people age, it's common to experience an occasional memory lapse - many of us laugh off these "senior moments." However, experts stress how important early intervention is, and they recommend that anyone caring for the elderly to be on their toes.

"Be observant when visiting an older loved one," said Jarmel Wilson, an experienced social worker with the Alzheimer's Family Relief Program, an affiliate of Alzheimer's Disease Research. "Pay attention to the state of their home ... if the home appears to be overloaded with clutter or the person seems to be neglecting their dress or grooming, it could be a warning sign for dementia." She adds that piles of mail and unpaid bills might also indicate that the person is struggling with their day-to-day activities. (See accompanying sidebar for early warning signs.)

If you notice a pattern that indicates early stage Alzheimer's, suggest that your friend or loved one visit their family doctor. The Alzheimer's Association says that although there is no one test to detect the disorder, widely accepted clinical criteria now enable physicians to diagnose the disease with 90 percent accuracy. Normally a diagnostic work-up is performed by a primary care physician, which may include consultations by specialists such as psychiatrists or neurologists. After providing a medical history, the patient will receive a physical examination, laboratory tests, a brain imaging procedure and an evaluation of their mental status as well as a psychiatric assessment.


The financial and human cost

According to information provided by AHAF, over 70 percent of Alzheimer's patients are cared for in the home by family members, many of whom are elderly and in bad health themselves. They say that because only a fraction of the cost of care for an Alzheimer's patient is covered by the government or by private insurance companies, inevitably the costs fall on the shoulders of the family.

GE Financial sponsored a recent survey that ascertained the cost of care in a nursing home now averages $57,700 per year. And this is only for custodial care - feeding, bathing, housing and other essential care. It does not include the cost of medicines, physical therapies or other medical treatments.

The care cost locally is not quite as much as the national average, but it is still very expensive. Betty Luckie, administrator for the Marshfield Care Center, said the per patient cost in the care center's Alzheimer's wing is $110 per day for a semi-private room. This computes to just over $40,000 per year. The care center currently has seven patients in the unit, with beds to accommodate 12. And although the facility does have Medicaid certified beds, many times the cost is handled by private pay.

The financial burden of having a loved one who has lost their memory and personality is only overshadowed by the human cost. Families suffer with the tremendous emotional strain that is placed on them as they struggle with the best care-giving options that are available; to say nothing about the physical stresses they endure while trying to take care of their family member day in and day out, round-the-clock.

Luckie said the psychological affect on family members is also a consideration, as many people have heard that Alzheimer's is an inherited disease. "It's something they think about, and it really takes a toll," she said. Luckie said as family members look at "a person that's no longer Mom," they worry that the same fate may await them.

She also said that by the time a family decides to admit an Alzheimer's sufferer to a care facility, "the caregiver is in total burn-out." The major caregiver, usually the spouse or many times a daughter, is simply unable to ever relax or get any rest.

"They (the caregiver) are always listening for them (the sufferer) to be up, and worried about one of the biggest hazards ... them walking out the door or turning on the stove," she said.


A local family copes with Alzheimer's

One family in Marshfield has had more than their share of facing Azheimer's. George Hoover and his sister, Evelyn Close, graciously agreed to talk about the years they, along with another sister, Marilou Cunningham, spent coping with the heartache that affects the sufferer and their families. Both their mother and Evelyn's husband had Alzheimer's.

Hoover said that after losing his father, his mother never seemed the same. "We thought it was grief," he said, describing the change in normal daily activities and in their mother's personality. But thinking back, the family realized that their mother was dealing with the beginning stages of Alzheimer's, that was creating stress and anxiety when trying to handle simple chores.

Hoover said that before his father passed away, he had tried to prepare his wife to carry on, by going over such things as reconciling the checkbook. Hoover also said his father had begun to handle some household routines such as grocery shopping, something he used to never do. "Dad was protecting her," said Hoover, although it was months after his father passed on that the family realized it.

But one day Hoover did notice a definite change in his mother, as he observed her pacing up and down her hallway, clutching the checkbook in her hands. "She became obsessed with that checkbook," he said, and she became very agitated. Not only was she confused with balancing the checkbook, but writing out the weekly check to her church as well.

"I could see it in Mother's face, that she knew she should be able to do these things," George said. "She was frightened," said Evelyn.

So was the family.

The Hoover family has another brother, H.D., who is a professor at the University of Iowa, and the third builder of the famed Iowa Basic Skills Test. The family took their mother to the research hospital affiliated with the university, where she was diagnosed with Alzheimer's.

Knowing that their mother could no longer live alone, Hoover and his sister Marilou thought they had found the perfect assisted living environment in Springfield. But after only a week, the center administrator called them, saying, "Your mother can't function here."

The family then tried a live-in companion for their mother. "She (companion) was very caring and capable," said Evelyn, "... but Mother didn't want any part of it."

It was then that the family decided to move their mother to Webco Manor in Marshfield, where she would reside for the next eight years. It was also the beginning of what Hoover described as "the worse time of my life."

The family said the facility took excellent care of their mother, but by this time she no longer recognized them when they visited. Evelyn said every once in a while, during the earlier days of her mother's disease, she did see a flicker of recognition in her eyes, but it didn't last for long.

George likened the change to a curtain closing. "When she stopped recognizing us, it was just like the curtain closed over her eyes."

"It was so, so hard to handle," said Evelyn, who at the time was still living with her husband in Texas. "It was hard, living away, ... Mother had lost total recognition when I did come to visit."

George said Marilou visited their mother daily, he not quite as often. And when he went, it was mostly for his own piece of mind. "You go for yourself, because they certainly don't recognize you," he said. Their mother, who never did sleep much, began sleeping about 15 hours a day once her condition went into rapid decline. She was 82 years old when she passed away in 1991.

"The greatest relief was when the curtain closed, and she no longer knew what was going on," said George. Evelyn agreed that it was the insecurity of partially knowing "something was wrong" that was so frightening to her mother.

Although George and Evelyn said their mother's Alzheimer's disease had advanced significantly before they knew what it was, they still think of their father's death as the beginning of their mother's illness.

"Mother left us the day Dad died," said Evelyn, adding, " ... Dad was her rock of Gibraltar." The brother and sister shared a laugh as they reminisced that their mother never even used her first name, Ruth, when she wrote checks. She always signed them as Mrs. Hiram Hoover.


Further heartache

Evelyn described her husband Bob, an attorney in Texas for 30 years, as very intelligent. An athletic man, he was a runner, golfer, and during his college days he played football for Texas Tech. He was very active in his church and community of Perryville, Texas, and was well known all over the state.

Bob was only 45 years old when he was diagnosed with Parkinson's disease - a disease caused by gradual deterioration in certain nerve centers inside the brain. Normal symptoms involve involuntary shaking of the hands, the head, or both.

The year Bob was diagnosed with the disease was also the first year he was elected to serve as a state representative. Evelyn said people didn't realize that Bob had Parkinson's, and he went on to serve three terms in the state legislature.

"He never said, 'why me?' about his disease," said a proud Evelyn, adding that although she didn't think of Bob as a stubborn man, "he was sure determined to control that disease."

Evelyn and Bob moved to Marshfield from Texas about 10 years ago, wanting to be closer to Evelyn's family. Once back in Missouri, they visited doctors at Barnes-Jewish Hospital in St. Louis, hoping that the respected research facility may be aware of new drugs or treatments to help Bob's Parkinson's condition. While there, Bob was diagnosed with an additional disease - Alzheimer's.

Evelyn continued to take care of Bob at home for as long as she was physically able to do so - about two years. She tried to change his scenery once in a while by taking him on drives, but Bob didn't like that. "It was taking him out of a familiar environment ... he did not enjoy it," she said.

Evelyn was then faced with the decision she knew she eventually would have to face - placing Bob in a nursing home. "It was the worst day of my life," she said, knowing that Bob was aware enough at that time to know he was leaving his home.

Bob soon became accustomed to his room at Webco Manor, so much so, that it began to feel like home to him. And, once it became familiar, "He didn't want to leave it," Evelyn said.

One of the hardest things to face with Alzheimer's and many other diseases, is the loss of the person's dignity. There's nothing more humbling than having someone wash you or take care of other personal needs.

"Bob was a very dignified man, and having to go from dignified, to where you've lost every ounce of dignity, is hard," said Evelyn, adding that after awhile, her husband did become resigned to the daily routines.

Two things Bob never lost though, was his smile for his wife when she visited twice daily, and reaching out for her hand when she came in the room. He also never lost his politician's style. "He was always smiling and shaking hands with everyone," Evelyn said.

Evelyn was at Bob's side when he passed away five years ago. She took him "back home" for burial in his native Texas, where he had lived for 43 years. Evelyn stayed in Marshfield where she has family and community ties. Proud and determined, she said, "None of us know where life will lead us. That's just life ... we go on."

And she has. Evelyn is very active in her church and many volunteer organizations. On the day of this interview, she was on her way to Springfield's Ronald McDonald's house. She also volunteers at St. John's Regional Health Center in Springfield, and can't wait to get started with her next volunteer project at Cox Medical Center - providing "cuddle therapy" for premature babies in the nursery. "I've always loved babies," she said.

The five Hoover children are very close, and gather together at least once a year, even though one sister lives in South Carolina and one brother in Iowa. Evelyn said the comment made by Luckie about families worrying that the disease being inherited is true.

"When we're all together and one of us forgets something ... we say 'uh-oh, it's happening.' We always laugh about it, and we don't dwell on it ... but we all realize the risk. We're all getting older and know it's possible.


Local help

Although they don't have a separate wing or unit for Alzheimer's patients, Webco Manor in Marshfield does care for residents who suffer from dementia and Alzheimer's. Cathi Rust, Webco administrator, works with the patients and their families, like the Hoovers.

The Strafford Care Center does have a separate unit for Alzheimer's patients, as does the Marshfield Care Center, which opened its separate wing in 2000. The current patients at the Marshfield facility range in age from 61 to 92.

Luckie said the Marshfield Care Center maintains a separate unit so "the environment will be consistent," thus less stressful on the patient. The locked wing provides patients with their own activity and dining room, although some do have lunch with the other residents. The self-contained area also has its own enclosed courtyard, with a high fence for safety and security. "Right now we don't have anyone that is a big elopement risk, but that could change tomorrow," said Luckie.

Luckie explained that some "higher functioning" Alzheimer's patients feel a need to escape. "It becomes their mission ... 24 hours a day ... to elope," she said.

The center strives to enhance the patient's senses, with the smell of bread baking, popcorn, blue berry muffins, and familiar home-cooked favorites such as fried onions and potatoes. Some of the residents help with the meal preparation, then it is cooked in the kitchen and returned to their dining room.

The care center also has daily Alzheimer wing activities such as ball toss, pretty hair hour (where the women patients get their hair curled), soft hands, short stories and time to reminisce.

"We see the most response when we can stimulate," said Luckie, who has only been on board as the center administrator for a couple of months. She previously worked with Alzheimer's patients at a Springfield facility, and said she has further plans for the Marshfield unit and overall center.

"I've got a lot of things to put in place yet, and we're continuing to build the program," she said. "The secret for a successful (Alzheimer's) unit is staff training," which Luckie said she is pursuing, along with initiating a community support group.

Another area resource is the local chapter of the Alzheimer's Association, at the Glen Isle Center in Springfield. Located at 1500 South Glenstone, the center can be reached at 886-2199, toll-free at 1-800-487-0747, or by visiting their Web site at www.alz-swmo.org.

The American Health Assistance Foundation, located in Clarksburg, Md., can be reached at 1-800-437-2423, or visit their Web site at www.ahaf.org. The foundation also has a disease research program as well as a family relief program that provides financial assistance to Alzheimer's patients and their caregivers. Also available from the foundation for free, or for only a nominal charge, are numerous booklets, brochures and newsletters ranging in topic from legal and financial advice to selecting an appropriate nursing home.


Recent medical advancements

Alzheimer's Disease Research (ADR), a program of AHAF, has reported that recent laboratory discoveries have led to major strides in medical research regarding Alzheimer's.

Scientists at Washington University in St. Louis recently announced that they had managed to reduce the number of brain plaques in Alzheimer's induced-mice.

Last year, scientists at John Hopkins University School of Medicine identified an enzyme, called BACE1, which interferes with the normal processing of the amyloid precursor protein. This finding has paved the way for scientists to begin searching for a drug that would block the actions of BACE1, thereby halting the process of plaque creation.

Researchers are also making headway in dealing with full-fledged Alzheimer's once it has developed. One effort involves the development of a vaccine that either prevents the formation of amyloid beta or eliminates it from the brain.

A recent study conducted by Boston University School of Medicine, the University of Massachusetts and Harvard School of Public Health, found that people with high cholesterol who were being treated with a statin drug had a 70 percent lower risk of dementia than their counterparts who took no cholesterol-lowering medication.

A second study by scientists at Loyola University Medical School analyzed a three-hospital database of patients with high cholesterol. The result - those taking a statin drug lowered their risk of developing Alzheimer's disease by 60 - 70 percent.

There is also a new drug soon to be available in the United States. Merz Pharmaceuticals, the maker of the drug called memantine, won approval to distribute it throughout Europe last year, and the FDA has now cleared it for U.S. distribution.

It is not a wonder drug that can reverse the disease process, but research indicates that it can slow down the progressive loss of brain cells. Eugene Michaels, president of ADR, says that it could benefit a significant number of American Alzheimer's victims.

"Up until now there has been very little that could be done for the middle-to-late-stage patient," said Michaels, "It's a tough time for family members, watching their loved one steadily declining and not being able to help. If these patients could be stabilized for even a few months, it would give them and their families more precious time to interact."

ADR states that Forest Laboratories has gained approval for distribution of memantine in the U.S., hopefully by the end of this year.


Sidebar:


Knowing the early warning signs of Alzheimer's disease:


Alzheimer's Disease Research, a program promoting research into Alzheimer's disease, outlines the following possible warning signs:

* Memory loss - that is severe enough to interfere with daily functioning, and that gets progressively worse. Forgetting where you parked the car is normal; forgetting how to drive it is not.

* Getting lost in familiar places - Alzheimer's patients can suddenly forget how to get home from a familiar place.

* Difficulties with language - such as a consistent inability to remember words, or using words inappropriately in a conversation.

* Feeling overwhelmed - and making multiple errors when attempting to perform intellectual tasks like reading or balancing a checkbook.

* Personality changes such as mood swings and unexplained agitation. This can be a sign of depression or another health problem, but combined with some or all of the above, it could also be an early sign of Alzheimer's.


©Ozarks Newsstand 2003