IS IT ALZHEIMER’S?
WARNING SIGNS YOU SHOULD KNOW
If someone you love shows these symptoms, it could be Alzheimer’s disease. For information on how you can help, call the Alzheimer’s Association of Orange County at 714-283-1111.
- Forgetfulness or recent memory loss that affects job skills.
- Difficulty performing difficult tasks.
- Inability to find or use the right words.
- Disorientation of time and place.
- Poor or decreased judgment.
- Problems with Abstract thinking.
- Misplacing things or putting them in inappropriate places.
- Sudden changes in mood or behavior.
- Changes in personality.
- Loss of initiative
Aging: Small Is Beautiful
The newest thing in end-of-life care: residences that look—and feel—like the house you’ve lived in all your life.
By Claudia Kalb and Vanessa Juarez
Aug. 1 issue – Dorothy Green had always been an independent woman. A Cadillac-driving, mink-coat-wearing, Tiparillo-smoking woman. So it was especially hard on her family members when they realized that their spitfire matriarch, now 85 and suffering from dementia, could no longer care for herself. Last year Green’s family moved her into a 60-bed assisted-living facility in San Luis Obispo, Calif. Green was well cared for, but she didn’t like the rigid schedule. And living with dozens of other people made her agitated. “She would cry a lot,” says her granddaughter and staff nurse, Teri Weitkum.
All that changed last fall, when Green moved 30 miles away into a luxury suburban home called Vista View. The stand-alone house is a long-term-care facility for people with Alzheimer’s and other forms of dementia, but it feels like home. There are spacious bedrooms, wall-to-wall carpeting and a garden, where residents grow tomatoes and squash. In the mornings, Green pads around in her slippers. One recent summer day, she and her three housemates gathered for beef stew served on china plates with designer cutlery. “They treat me like I’m a somebody,” says Green.
It seems so obvious: let people age the way they have lived. Today, finally, it’s beginning to happen. From upscale residences in California to family-size nursing homes in Mississippi, living facilities for the elderly are undergoing an architectural and cultural makeover: big, sterile institutions are out, small, homey environments in. The need has never been greater. Today 35 million Americans are over the age of 65—by 2030, that number is expected to double. As baby boomers age into sixtysomethings, the demand for civilized living will only intensify. “We have to completely transform the system,” says Rose Marie Fagan of the Pioneer Network, an umbrella group for innovative aging programs.
Nursing homes are at the top of the list. Many of the nation’s 17,000 institutions are decades old and operate on an impersonal hospital model—lackluster corridors, shared bedrooms, strict sleeping hours. Enter Dr. Bill Thomas, a 45-year-old geriatrician at SUNY Upstate Medical Center, who’s on a mission to revolutionize long-term care. In the 1990s, Thomas launched the “Eden Alternative,” which called for humanizing big facilities by removing nurses’ stations, adding plants and pets, and focusing on the staff-elder relationship. Eden was just the beginning. Today his baby is the National Green House Project, a radical shift away from large institutions to homes with no more than 10 residents each. The advantages: cozy living, privacy (individual bedrooms and baths) and time for caregivers to get to know residents—not just their medical needs, but their life stories, too.
The project’s birthplace is Tupelo, Miss., where Steve McAlilly, CEO of Mississippi Methodist Senior Services (MMSS), is making Thomas’s vision a reality. Several years ago MMSS was going to replace a worn-out 140-bed nursing home called Cedars Health Center with a big new facility. Then McAlilly learned about the Green House Project. “Intuitively,” says McAlilly, “it made sense.” In 2003, MMSS opened the first four Green Houses in the nation. Two more launched in June and four are expected to open by mid-September. The 6,000-square-foot single-story houses, which cost the same to live in as Cedars, have a driveway, a doorbell and a yard. Residents get to select, and even help cook, their own meals. In Mississippi, says Jude Rabig, the project’s executive director, that means plenty of okra and fried chicken. Mildred McDonald, 85, says mealtime reminds her of her childhood, when she and her seven siblings ate around a long table. “It’s like family,” she says. Today dozens of other Green Houses—from New York to Hawaii—are in the planning stages or have recently broken ground.
As the home-living concept spreads, questions arise: Is the medical care adequate? Is quality of life improved? Daniel Carsel, founder of Alta Vista Living, which owns Vista View, says he was prepared to witness the rough transition that people with Alzheimer’s typically experience when they move. Instead, he says, many residents were settled within a day. “We were reducing medications, people were eating more,” he says. Alta Vista operates a second house in California and plans to open a third this August. Rosalie Kane, a long-term-care expert at the University of Minnesota’s School of Public Health, has studied the Tupelo houses for two years. Compared with traditional nursing homes, she says, residents are more satisfied and in better physical shape. And in an industry with a massive work-force-retention problem, caregivers feel more empowered and relish the personal contact with residents. The result: they’re more likely to stay on the job.
Long-term-care facilities never come cheap. The average monthly price tag in a nursing home is more than $5,000. The Tupelo Green Houses, which are licensed as nursing homes, ring in at $4,350; Medicaid covers the cost for most residents. At Alta Vista Living, shared rooms are $4,500 per month, private ones, $5,500. But because the houses operate as assisted-living facilities—residents need help with daily living, but not skilled nursing care—government insurance doesn’t pick up the tab. Jill Hreben, CFO of Otterbein Homes, which manages six retirement communities in Ohio, admits that she was skeptical about the business model at first. But after visiting Tupelo, Hreben concluded that the project’s simple organization—no hierarchy, no separate departments for food, laundry, maintenance—would ultimately reduce costs. Otterbein is now planning to convert its own nursing homes into Green Houses. “I think the dollars are going to work,” says Hreben.
The lifestyle does, says McDonald’s granddaughter Sherry Wood. McDonald, who has dementia and congestive heart failure, feels right at home in the Green House she moved into this spring. “She has a smile on her face,” says Wood. “She’s happy.” The ultimate vision for the future.
With Nomi Morris
© 2005 Newsweek, Inc.
DEPARTMENTS OCTOBER 2004
Board-and-care facilities offer aid in familiar setting
By Sandy Bennett
Ruth Nantell and her place of residence break the commonly held vision of an elderly individual who lives outside the home. Rather than dozing throughout her day, the 92-year-old is up and about, carefully groomed and interacting with others.
“I love it here,” she later says, adding with a laugh, “If I didn’t, my daughter would hear about it.”
Ruth, who has some memory loss and moves around with the aid of a walker, lives in a residential-care facility. Unlike the larger assisted living centers, which typically serve 100 or more residents, full-time care is provided within the home. A white picket fence and large, shade tree adorn the outside of the single-story home that Ruth shares with five other women and their caregivers. Located on a cul-de-sac in Irvine, the inside is equally beautiful despite the emphasis that is placed on safety and accessibility.
Doorways, for example, have been widened. Bathroom sinks are curved so that someone using a walker or wheelchair can reach. And toilets and showers have been modified. Extra padding under carpeted areas provide additional cushion in the event of an accidental slip or fall. And an alarm lightly sounds if a door leading to the outside of the home or the garage is opened.
What draws notice is Brandy, the resident’s pet Sheltie; the popcorn machine that stands against the family room wall; and the garden-cut flowers that sit on the dinning room table near each residents’ place mat, which has been decorated and laminated with photos of their family.
This particular home is one of 14 residential care facilities for the elderly owned and operated by gerontologist Jacqueline Dupont-Baum. In all, there are approximately 725 residential care homes in Orange County.
Ruth began living in one of Dupont-Baum’s Irvine Cottages homes in May after a six-week stay at Mesa Verde Convalescent Hospital in Costa Mesa for two broken vertebras.
“As she was getting ready to be discharged from there, she really wasn’t ready to come back to my home,” says daughter Sharon, who also lives in Irvine. “She wasn’t quite there, but she really was past being able to stay at the skilled nursing facility.”
In addition to the 24/7 care and stimulation through a host of activities, including music therapy, exercise, outings and more, Sharon was perhaps most impressed with the matching of like residents. Each resident at the Irvine Cottages receives an assessment prior to placement and is ranked on a scale from one to six. Ruth, who scored a six, was among the most highly functional.
“The groupings were mixed,” says Sharon of the other residential care facilities she visited. “There were women who were very sharp, like my mother, and then women who were very severely impacted by Alzheimer’s. They were all in the same house.”
The option proved cost-effective as well. Several months prior, the family had hired a full-time caregiver to assist Ruth in her home in Cleveland before moving her to Sharon’s home last October. The service cost more than $8,000 a month, compared to a little more than $3,400 a month for a shared room at Irvine Cottages. (Room rates vary according to the level of care needed by resident.)
Sharon was equally impressed with the close monitoring of each patient. In addition, to the attentiveness and watchful eyes of the caregivers, the home has 24-hour camera recording and camera monitoring. A small alarm is also clipped to the outside of Ruth’s clothes to alert caregivers of any movement during the night. And each room comes equipped with audio monitors.
“I walked into Cottage 6 to check it out and …I knew my mother would be happy here,” says Sharon. “And I have the peace of mind that she’s really being monitored.”
For more information on Irvine Cottages, call 949-462-4071. For referrals for other residential care facilities in Orange County, call the United States Elder Care Referral Agency in Costa Mesa at 800-848-1008 or the Council on Aging-Orange County at 714-479-0107.
Sandy Bennett is associate editor of OC Family Magazine.
CHECKLIST FOR RESIDENTIAL CARE
As with any service, the quality provided varies from. Here are areas gerontologist Jacqueline DuPont-Baum, owner of 14 residential care facilities in Orange County, recommends families check if they are considering placement for a loved one.
- Odors: Is the home odor-free? Pay special attention to the kitchen and make sure it has proper ventilation.
- Medications: Are they locked and stored in a safe place? Also check to see if the facility charts for medication.
- Care plan: This is where areas such as medication changes, behavioral changes, eating habits, exercise programs, etc., are documented. Find out how often one is completed and what areas are covered.
- Meals: Many facilities serve food bought in bulk. Are fresh fruits and vegetables included in the residents’ diet?
- Staff: Ask how they train caregivers, and the length of time they have been working at the facility. What is their retention rate? What is the staffing ratio?
- Security: Is the facility secured? Are there alarms in place?
- Activities: Are residents stimulated? Are there activities, such as music therapy, exercise and outings? Also check the functional level of other patients.
- Setting: In addition to being clean and organized, check for good lighting. Also take into account the size and number of mirrors. Patients with dementia tend to be overwhelmed with lots of mirrors, particularly large.
- Medical assistance: What does the facility do when a resident becomes sick or needs lab work or an X-ray. Do they have a physician who comes to the home? Will they take the resident to an appointment?
Dying should be a quiet time
JANE GLENN HAAS
Terri Schiavo is not the first nor the last person to die in a hospice.
She isn’t the first nor the last to have a feeding tube removed.
But she, and 70 other people dying in the Florida hospice with her, may be among the first to suffer elder abuse because they are at the end of their lives.
And I’m not talking about removing feeding tubes.
I’m talking about verbal abuse and noise abuse from the media circus outside Woodside Hospice and the self-serving protesters who shouted and bullied family members visiting their own dying loved ones.
Then there is access abuse. Police set up checkpoints to park, required family members to show identification and then pass through another screening. One woman didn’t make it in time to her dying grandfather’s bedside because of the slow-moving security measures.
People who have nothing to do with Schiavo’s case were harassment targets for protesters who held up signs about Schiavo’s “crucifixion,” “torture” and “starvation.”
As I write this, Schiavo is still alive, and her family has asked the protesters to leave.
But they won’t. They’re having too much fun being the center of attention.
“Give Terri water!” they chant. People in wheelchairs, members of Not Dead Yet, a disability-rights organization focused on end-of-life issues, blocked an entrance to the hospice when they lay across the driveway yelling, “We’re not dead yet!” according to news reports.
In their eagerness to claim the right to live, they are denying the dying a death with dignity and peace.
That’s elder abuse. Thoughtless, selfish, uncaring and mean-spirited elder abuse.
Thousands of people are served by hospice in their last days. Many stay at home, surrounded by family caregivers. Others may be cared for in professional settings.
Many elderly patients on hospice often decide not to have a feeding tube inserted. Or relatives refuse the tube, saying the quality of life is gone, there is no chance for recovery and the time has come to let nature take its course.
None of these decisions is easy, says Debra Alves, director of Irvine Cottage, one of 15 residential-living homes operated by gerontologist Jacqueline DuPont-Baum. Of the 90 patients in her homes, DuPont-Baum estimates that 35 are in a hospice program.
Their last days are passing peacefully, which is the central point of hospice.
Schiavo and others in Woodside Hospice don’t have that option.
Easter afternoon, about 100 people stood outside the Pinellas Park facility, blocked from the sidewalk by barriers of orange plastic.
One man periodically blew a ram’s horn, according to news reports. Another chanted. People were sleeping in tents.
Those interviewed talked about their right to “righteous anger.” They shouted “fascists” and “Gestapo” at the police.
Yes, they are entitled to free speech as well as their own agenda about death.
But if it’s true one of the last senses to die is hearing, consider that this agenda is being screamed into the ears of other dying people.
The anger, the vilification, is impacting family members forced to make similar hard choices about end-of-life issues.
This isn’t educational or motivational.
It’s elder abuse. And elder abuse is a crime.
Do you know where your money is? Therapist Barbara Denny and Smith-Barney professionals Claudia Schumacher and Sue Mamer will help midlife women identify and feather their nest eggs at the next WomanSage meeting, April 12.
The group meets at 6:30 p.m. at First American Corp., 1 First American Way, Santa Ana.
Lawmakers see deterrent to mistreatment
March 7 — Clark Houghtling lives more than 300 miles away from his mother, an 87-year-old who suffers from dementia. But Mr. Houghtling and his sister see that she is tucked into bed every night at her assisted-living apartment outside Buffalo, N.Y. How? They log onto their computers and switch on a video camera in her bedroom.
THE SIBLINGS had the cameras installed in their mother’s apartment several years ago, after she fell and spent hours stranded on the floor. (The computers and cameras are linked by telephone lines.) “It was very disturbing to us when we realized it could have been 12 to 16 hours before someone came to check on her,” Mr. Houghtling says. A few years ago, his sister, using her laptop, saw their mother fall again. She called the facility, and within minutes three aides were there to help. “These cameras are a wonderful thing,” he says.
For years, the long-term care industry has largely managed to block the use of “granny cams,” video-surveillance cameras that families sometimes use to watch over elderly or disabled residents in nursing homes or other facilities. There are no laws against such cameras. But many nursing-home owners, as well as employees and insurers, discourage their use, on the grounds that they are an invasion of privacy.
“When [residents] are having diapers changed and wounds changed, their bodies are being exposed,” says Sherry King, a doctor at two Jacksonville, Fla., nursing homes and president of the Florida Medical Directors Association. “To have that on camera constantly is really bizarre.”
Yet granny-cams are starting to get lawmakers’ attention. At a Senate hearing Monday, Michael Peters, an Orlando, Fla., attorney who represents nursing-home residents, testified that cameras would potentially eliminate abuse and neglect if employees knew they were being watched. Meanwhile, legislators in at least a dozen states are trying to make it easier for families to install cameras. Texas enacted a law spelling out families’ surveillance rights last summer. A pilot project employing cameras is on the drawing board in Maryland, and a similar one would be authorized in Florida as part of a bill now making its way through the legislature, after state regulators last month recommended permitting cameras’ use.
Many lawmakers who support cameras do so after personal experience with nursing homes. Maryland Delegate Sue Hecht introduced one of the first granny-cam bills after walking in on a nursing-home worker cursing and screaming at her mother. “I felt like I had no control over seeing if this happened again,” she recalls.
Her proposal would require nursing homes to permit residents or their families to install cameras at their own cost. The families would have to obtain the consent of roommates and post signs stating that a camera is in use. Anyone tampering with the camera would be subject to criminal penalties. “This bill is designed to jump-start what everyone is going to eventually embrace-an extra eye and ear for an industry that truly needs help,” Ms. Hecht says.
The U.S. nursing-home industry-comprising 17,000 facilities and 1.5 million residents-disagrees. Managers and labor leaders say cameras make it tough to attract workers. “Adding the stress of … constant surveillance to these very demanding jobs is another reason why people would ask, ‘Why do I want to do this for $7 an hour?’” says Dale Ewart, secretary-treasurer of Local 1199 of the Service Employees International Union, Miami.
The industry frets that cameras will drive up liability insurance premiums by touching off a landslide of lawsuits. Already, some insurers are weighing whether to pull out of markets where legislation is pending. “As an underwriter, the way we can deal with this is to refuse to write the coverage,” says J. Sterling Shuttleworth, chief executive of Uni-Ter Underwriting Management Corp., an Atlanta unit of U.S. RE Cos., who testified against cameras at a Florida hearing last fall.
Even some families who have successfully fought to use cameras discover they have limits. In Anchorage, Alaska, Marty Margeson lobbied for months for permission to tape her father’s room at a nearby assisted-living facility. The camera put an end to “unexplained bruising on his arms and hands,” she says. But some of her complaints have gone unheeded. “I don’t know what I can do with all this footage,” she says. “A solid year of watching your father being jerked out of bed in a sheet, and you’ve tried and tried to stop them — it gets old.”
A few facilities have embraced the cameras.
Gerontologist Jacqueline DuPont-Baum runs six homes for Alzheimer’s patients in Irvine, Calif. Cameras are in place in residents’ bedrooms and common areas. She obtains written consent of families and workers.
“The cameras are really useful as a deterrent,” Dr. DuPont-Baum says, protecting workers from false allegations of abuse and attracting “really kind people,” who don’t mind being monitored on the job. Nursing homes already “allow for shared rooms … [and] for a diaper to be changed in front of another resident,” she adds. “Where’s the dignity in that?”
Cindy and Mark O’Steen, who own and run Southland Suites, a 36-bed assisted-living home in Lake City, Fla., installed cameras in common areas and hallways eight years ago, after they stopped living on the premises. The O’Steens and family members log onto a Web site to observe residents. The extra eyes help make sure their staff is trained well, Ms. O’Steen says. And in contrast to operators’ fears, the couple’s liability-insurance premium has dropped, to $11,000 in January from $57,000 last year. (The O’Steens say they don’t know if the drop was directly related to the cameras, but they did give their insurer information about the cameras).
Families say cameras will only become more valuable as the nursing-home population grows. Thor and Becky Hallen, a Beaverton, Ore., couple, used a hidden camera several years ago to catch a worker at a Texas nursing home throwing Mr. Hallen’s mother into a chair. The couple told the administrator about the camera and left it running. “When they found out about the camera,” says Ms. Hallen, “it was amazing how good the care got.”
New trial to treat Alzheimer’s seen as “game changing”
By Wyatt Andrews
BOSTON — Helene DeCoste of Boston is a patient in a ground breaking clinical trial, testing whether a drug called Solanezumab can slow down or even prevent Alzheimer’s disease. No drug has even come close before, but researchers have never tested patients quite like Helene in quite this way before.
“She is a perfect patient for this trial,” said Dr. Reisa Sperling, a physician at Harvard University and the project director of what’s called the A4 Study.
A4 is an ambitious, international trial in which 60 hospitals are looking for 1,000 patients like DeCoste. Dr. Sperling says they have to be patients who are not yet exhibiting signs of memory loss, but who also have brain scans suggesting they will get Alzheimer’s in the future.
Specifically they have a buildup of what’s called amyloid plaque, which doctors believe is what kills off brain cells. The hope in this trial is that the drug will destroy the amyloid before the amyloid destroys the brain. Dr. Sperling says she’s excited, calling this trial “game changing.”
“For the first time I think we have a chance to really change the course of Alzheimer’s disease,” Dr. Sperling told me.
Still for the patients just being in this trial means you’ve been told you are likely to get this disease. Helene said she set herself up to expect the worst before getting the news.
“I’m going to do everything I can do to help myself put it off as long as I can,” DeCoste told me.
Dr. Sperling and DeCoste did not know each other before, but they have the same personal reasons for fighting Alzheimer’s. Dr. Sperling lost her grandfather to Alzheimer’s; DeCoste has watched her sister who has the disease, and her other, who died because of it, both suffer anguishing declines.
“I just couldn’t deal,” said DeCoste. “Your mother doesn’t know who you are. My sister now has it and she’s only six years older than I am. I used to say to my kids that if I get this disease, shoot me because it’s horrible to watch someone go through it.”
An important study released Tuesday from the Mayo Clinic identifies a different toxic protein called tau as the likely cause of Alzheimer’s. Most researchers believe that tau and amyloid are connected and the A4 Study has now been expanded to track the buildup of both in the brains of these patients.
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