Breathing 4 Life's Memory: January 02

Saturday, January 8, 2011

Labels: Alzheimer's Association, Alzheimer's disease, Barack Obama, Health, Maria Shriver, Pete Rouse, United States, White House

Landmark legislation passes

The National Alzheimer's Project Act (NAPA) is the largest legislative victory in many years for the Alzheimer cause. Over the last several years, the Alzheimer's Association has been the leading voice in urging Congress and the White House to pass the National Alzheimer's Project Act (NAPA). The National Alzheimer's Project Act will create a coordinated national plan to overcome the Alzheimer crisis and will ensure the coordination and evaluation of all national efforts in Alzheimer research, clinical care, institutional, and home- and community-based programs and their outcomes. Alzheimer's advocates were instrumental in moving NAPA through Congress. More than 50,000 e-mails, nearly 10,000 phone calls and more than 1,000 meetings by the Alzheimer's Association and its advocates led us to the historic legislative victory for the Alzheimer community.

January 4, 2011	President Obama signs NAPA into law, marking the largest legislative victory in many years for the Alzheimer cause.

Late December	Alzheimer's Association advocates have sent more than 15,000 email messages to the White House asking the President to sign the National Alzheimer's Project Act into law.

December 15, 2010	Thousands of advocates flood Capitol Hill with phone calls and e-mails urging their Representatives to vote for NAPA. NAPA is passed by the House of Representatives and moves to the White House for signature.

December 9, 2010	Alzheimer's Association President and CEO Harry Johns testified before the House Committee on Energy and Commerce, Subcommittee on Health. Harry spoke about the importance of NAPA and encouraged its immediate passage.

December 8, 2010	After Alzheimer's Association advocates blanket Senate offices with phone calls and e-mails for several days, asking the Senate to pass NAPA immediately, the National Alzheimer's Project Act (S.3036) passed the Senate unanimously and moved to the House of Representatives.

December 1, 2010	After months of behind the scenes work by the Alzheimer's Association federal affairs team with champions in Congress, the Senate Committee on Health, Education, Labor, and Pensions (HELP) approved the National Alzheimer's Project Act (S. 3036).

October 18, 2010	With the release of The Shriver Report: A Woman's Nation Takes on Alzheimer's Disease, repeated appeals are made for the passage of NAPA in Hill visits, Administration briefings, Washington policy briefings, and by Maria Shriver in interviews on This Week and other news programs.

September 21, 2010	Concluding the Alzheimer's Breakthrough Ride, on World Alzheimer's Day participants cycled to Capitol Hill and presented more than 110,000 petition signatures for delivery to Congress. The petition called for passage of the National Alzheimer's Project Act and two other Alzheimer's Association priorities. Researchers who participated in the Alzheimer's Breakthrough Ride visited Capitol Hill to meet with more than 50 Members of Congress, urging their support for NAPA. Later that day, the Alzheimer's Association delivered a message in support of NAPA at a special White House briefing on Alzheimer's disease. Harry Johns, Alzheimer's Association President and CEO, and National Board Member Stephen Hume, Psy.D., an individual living with the disease, made presentations at the meeting, focusing on the urgent need for a coordinated national Alzheimer's strategy and for its swift implementation. See the full video of the White House meeting.

July 30, 2010	The Alzheimer's Association President and CEO Harry Johns, former National Board Public Policy Chair Bettylu Saltzman, and Public Policy Vice President Robert Egge meet again with Pete Rouse, one of President Obama's top aides, to solicit the Administration's support for NAPA and for creating a national strategy to combat Alzheimer's disease.

Summer 2010	The Alzheimer's Association's President and CEO, Harry Johns, and the federal affairs team make the rounds on Capitol Hill, meeting with members of Congress and staff to drum up support for NAPA and to plan strategy on how to enact the bill by the end of the year.

March 9, 2010	Alzheimer's Association Advocacy Forum attendees march on Capitol Hill to meet with their Members of Congress, urging their support for the National Alzheimer's Project Act. David Hyde Pierce joins advocates from Iowa to meet with Sen. Chuck Grassley (R-Iowa).

February 2, 2010	With active collaboration and drafting support from the Alzheimer's Association, the National Alzheimer's Project Act is reintroduced by Senator Evan Bayh and Senator Susan Collins in the Senate (S.3036) and by Rep. Ed Markey and Rep. Chris Smith (H.R.4689) in the House. The Alzheimer's Association immediately endorses the reintroduced bill.

July 31, 2009	Based on the Alzheimer's Study Group recommendations and following consultations with the Alzheimer's Association, Sen. Mel Martinez introduces the first National Alzheimer's Project Act in Congress. The Alzheimer's Association immediately endorses the bill.

July 20, 2009	The Alzheimer's Association President and CEO Harry Johns, former National Board Public Policy Chair Bettylu Saltzman, and Public Policy Vice President Robert Egge meet with Pete Rouse, one of President Obama's top aides, to discuss the Alzheimer's crisis and introduce the need for a bold, coordinated national Alzheimer strategy to address it.

March 25, 2009	Alzheimer's Study Group releases its final report, A National Alzheimer's Strategic Plan: The Report of the Alzheimer's Study Group. The report calls for the creation of a National Alzheimer's Strategy and an Alzheimer's Project Office within the federal government. Harry Johns, President and CEO of the Alzheimer's Association, pledged, "You can be assured that the Alzheimer's Association will play a leading role in seeking the enactment of the core recommendations present in the ASG report." That same day, advocates attending the 2009 Alzheimer's Association Advocacy Forum visited their Members of Congress urging support for these key Alzheimer's Study Group recommendations, the beginning of the Association's ongoing campaign to accomplish this objective in the 111th Congress. Register now to attend the 2011 Alzheimer's Association Advocacy Forum.

July 11, 2007	With endorsement of, and financial and in-kind support from, the Alzheimer's Association, the Alzheimer's Study Group is launched at a Capitol Hill Conference. The Alzheimer's Study Group is also endorsed at the launch event by then Alzheimer's Disease Task Force co-chairs, then-Senator Hillary Clinton and Senator Susan Collins, and Rep. Ed Markey and Rep. Chris Smith, as well as by Senator Barbara Mikulski and Senator Richard Burr.

July 2007	Speaker Newt Gingrich and Robert Egge author an article in Alzheimer's and Dementia: The Journal of the Alzheimer's Association. This article, "Developing a National Alzheimer's Strategy Equal to the Epidemic," first makes the case for the creation of a federal Alzheimer strategy.

Read about the Association's other advocacy victories.

"National Alzheimer’s Project Act (NAPA)

Landmark legislation passes

The National Alzheimer's Project Act (NAPA) is the largest legislative victory in many years for the Alzheimer cause. Over the last several years, the Alzheimer's Association has been the leading voice in urging Congress and the White House to pass the National Alzheimer's Project Act (NAPA). The National Alzheimer's Project Act will create a coordinated national plan to overcome the Alzheimer crisis and will ensure the coordination and evaluation of all national efforts in Alzheimer research, clinical care, institutional, and home- and community-based programs and their outcomes. Alzheimer's advocates were instrumental in moving NAPA through Congress. More than 50,000 e-mails, nearly 10,000 phone calls and more than 1,000 meetings by the Alzheimer's Association and its advocates led us to the historic legislative victory for the Alzheimer community."

Monday, January 3, 2011

Labels: Alprazolam, Alzheimer's disease, Dementia, New York Times, Nursing home, United States, Xanax

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"The attitude toward chocolate and other comforts is an unusual posture for a nursing home, but Beatitudes is actually following some of the latest science. Research suggests that creating positive emotional experiences for Alzheimer’s patients diminishes distress and behavioral problems."

"The nursing home has encouraged keeping residents out of diapers if possible, taking them to the toilet to preserve feelings of independence."

Credit: Todd Heisler/The New York Times

The dementia floor was named Vermillion Cliffs, after colorfully layered rock formations formed by centuries of erosion, implying that, “although weathered, although tested by dementia, people are beautiful” and “have certain strengths,” said Peggy Mullan, the president of Beatitudes.

Credit: Todd Heisler/The New York Times

“The state tried to cite us for having chocolate on the nursing chart,” said Tena Alonzo, director of research. “They were like, ‘It’s not a medication.’ Yes, it is. It’s better than Xanax.”

Credit: Todd Heisler/The New York Times

Article: Giving Alzheimer’s Patients Their Way, Even Chocolate

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For Alzheimer’s Patients, Focusing on Comfort - Slide Show - NYTimes.com

Alzheimer’s Therapy Focuses on Care - NYTimes.com

THE VANISHING MIND

Giving Alzheimer’s Patients Their Way, Even Chocolate

Todd Heisler/The New York Times

Margaret Nance with the doll that has been calming to her at the Beatitudes nursing home. More Photos »

By PAM BELLUCK

Published: December 31, 2010

PHOENIX — Margaret Nance was, to put it mildly, a difficult case. Agitated, combative, often reluctant to eat, she would hit staff members and fellow residents at nursing homes, several of which kicked her out. But when Beatitudes nursing home agreed to an urgent plea to accept her, all that changed.
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Nancy Mendelsohn, whose mother, Rose Taran, was kicked out of other nursing homes, said she appreciates the independence fostered by the staff of Beatitudes in Phoenix. More Photos »
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Disregarding typical nursing-home rules, Beatitudes allowed Ms. Nance, 96 and afflicted with Alzheimer’s, to sleep, be bathed and dine whenever she wanted, even at 2 a.m. She could eat anything, too, no matter how unhealthy, including unlimited chocolate.

And she was given a baby doll, a move that seemed so jarring that a supervisor initially objected until she saw how calm Ms. Nance became when she rocked, caressed and fed her “baby,” often agreeing to eat herself after the doll “ate” several spoonfuls.

Dementia patients at Beatitudes are allowed practically anything that brings comfort, even an alcoholic “nip at night,” said Tena Alonzo, director of research. “Whatever your vice is, we’re your folks,” she said.

Once, Ms. Alonzo said: “The state tried to cite us for having chocolate on the nursing chart. They were like, ‘It’s not a medication.’ Yes, it is. It’s better than Xanax.”

It is an unusual posture for a nursing home, but Beatitudes is actually following some of the latest science. Research suggests that creating positive emotional experiences for Alzheimer’s patients diminishes distress and behavior problems.

In fact, science is weighing in on many aspects of taking care of dementia patients, applying evidence-based research to what used to be considered subjective and ad hoc.

With virtually no effective medical treatment for Alzheimer’s yet, most dementia therapy is the caregiving performed by families and nursing homes. Some 11 million people care for Alzheimer’s-afflicted relatives at home. In nursing homes, two-thirds of residents have some dementia.

Caregiving is considered so crucial that several federal and state agencies, including the Department of Veterans Affairs, are adopting research-tested programs to support and train caregivers. This month, the Senate Special Committee on Aging held a forum about Alzheimer’s caregiving.

“There’s actually better evidence and more significant results in caregiver interventions than there is in anything to treat this disease so far,” said Lisa P. Gwyther, education director for the Bryan Alzheimer’s Disease Research Center at Duke University.

The National Institute on Aging and the Administration on Aging are now financing caregiving studies on “things that just kind of make the life of an Alzheimer’s patient and his or her caregiver less burdensome,” said Sidney M. Stahl, chief of the Individual Behavioral Processes branch of the Institute on Aging. “At least initially, these seem to be good nonpharmacological techniques.”

Techniques include using food, scheduling, art, music and exercise to generate positive emotions; engaging patients in activities that salvage fragments of their skills; and helping caregivers be more accepting and competent.

Changing the Mood

Some efforts involve stopping anti-anxiety or antipsychotic drugs, used to quell hallucinations or aggression, but potentially harmful to dementia patients, who can be especially sensitive to side effects. Instead, some experts recommend primarily giving drugs for pain or depression, addressing what might be making patients unhappy.

Others recommend making cosmetic changes to rooms and buildings to affect behavior or mood.

A study in The Journal of the American Medical Association found that brightening lights in dementia facilities decreased depression, cognitive deterioration and loss of functional abilities. Increased light bolsters circadian rhythms and helps patients see better so they can be more active, said Elizabeth C. Brawley, a dementia care design expert not involved in the study, adding, “If I could change one thing in these places it would be the lighting.”

Several German nursing homes have fake bus stops outside to keep patients from wandering; they wait for nonexistent buses until they forget where they wanted to go, or agree to come inside.

And Beatitudes installed a rectangle of black carpet in front of the dementia unit’s fourth-floor elevators because residents appear to interpret it as a cliff or hole, no longer darting into elevators and wandering away.

“They’ll walk right along the edge but don’t want to step in the black,” said Ms. Alonzo, who finds it less unsettling than methods some facilities use, bracelets that trigger alarms when residents exit. “People with dementia have visual-spatial problems. We’ve actually had some people so wary of it that when we have to get them on the elevator to take them somewhere, we put down a white towel or something to cover it up.”

When elevator doors open, Beatitudes staff members stand casually in front, distracting residents with “over-the-top” hellos, she said: “We look like Cheshire cats,” but “who’s going to want to get on the elevator when here’s this lovely smiling person greeting you? It gets through to the emotional brain.”

New research suggests emotion persists after cognition deteriorates. In a University of Iowa study, people with brain damage producing Alzheimer’s-like amnesia viewed film clips evoking tears and sadness (“Sophie’s Choice,” “Steel Magnolias”), or laughter and happiness (Bill Cosby, “America’s Funniest Home Videos”).

Six minutes later, participants had trouble recalling the clips. But 30 minutes later, emotion evaluations showed they still felt sad or happy, often more than participants with normal memories. The more memory-impaired patients retained stronger emotions.

Justin Feinstein, the lead author, an advanced neuropsychology doctoral student, said the results, being studied with Alzheimer’s patients at Iowa and Harvard, suggest behavioral problems could stem from sadness or anxiety that patients cannot explain.

“Because you don’t have a memory, there’s this general free-floating state of distress and you can’t really figure out why,” Mr. Feinstein said. Similarly, happy emotions, even from socializing with patients, “could linger well beyond the memories that actually caused them.”

One program for dementia patients cared for by relatives at home creates specific activities related to something they once enjoyed: arranging flowers, filling photo albums, snapping beans.

“A gentleman who loved fishing could still set up a tackle box, so we gave him a plastic tackle box” to set up every day, said the program’s developer, Laura N. Gitlin, a sociologist at Thomas Jefferson University in Philadelphia and newly appointed director of the Center on Aging and Health at Johns Hopkins University.

After four months, patients seemed happier and more active, and showed fewer behavior problems, especially repetitive questioning and shadowing, following caregivers around. And that gave caregivers breaks, important because studies suggest that “what’s good for the caregiver is good for the patient,” Professor Gwyther said.

Aiding the Caregiver

In fact, reducing caregiver stress is considered significant enough in dementia care that federal and state health agencies are adopting programs giving caregivers education and emotional support.

One, led by Mary S. Mittelman, a New York University dementia expert, found that when people who cared for demented spouses were given six counseling sessions as well as counselors whom they could call in a crisis, it helped them handle caregiving better and delayed by 18 months placing patients in nursing homes.

“The patient did not have fewer symptoms,” Dr. Mittelman said. “It was the caregiver’s reaction that changed.”

The Veterans Affairs Department is adopting another program, Resources for Enhancing Alzheimer’s Caregiver Health, providing 12 counseling sessions and 5 telephone support group sessions. Studies showed that these measures reduced hospital visits and helped family caregivers manage dementia behaviors.

“Investing in caregiver services and support is very worthwhile,” saving money and letting patients remain home, said Deborah Amdur, chief consultant for care management and social work at the Veterans Affairs Department.

Beatitudes, which takes about 30 moderate to severe dementia sufferers, introduced its program 12 years ago, focusing on individualized care.

“In the old days,” Ms. Alonzo said, “we would find out more about somebody from their obituary than we did when they were alive.”

The dementia floor was named Vermillion Cliffs, after colorfully layered rock formations formed by centuries of erosion, implying that, “although weathered, although tested by dementia, people are beautiful” and “have certain strengths,” said Peggy Mullan, the president of Beatitudes.

The facility itself is institutional-looking, dowdy and “extremely outdated,” Ms. Mullan said.

“It’s ugly,” said Jan Dougherty, director of family and community services at Banner Alzheimer’s Institute in Phoenix. But “they’re probably doing some of the best work” and “virtually have no sundowning,” she said, referring to agitated, delusional behavior common with Alzheimer’s, especially during afternoon and evening.

Beatitudes eliminated anything potentially considered restraining, from deep-seated wheelchairs that hinder standing up to bedrails (some beds are lowered and protected by mats). It drastically reduced antipsychotics and medications considered primarily for “staff convenience,” focusing on relieving pain, Ms. Alonzo said.

It encouraged keeping residents out of diapers if possible, taking them to the toilet to preserve feelings of independence. Some staff members resisted, Ms. Alonzo said, but now “like it because it saves time” and difficult diaper changes.

Family members like Nancy Mendelsohn, whose mother, Rose Taran, was kicked out of facilities for screaming and calling 911, appreciate it. “The last place just put her in diapers, and she was not incontinent at all,” Ms. Mendelsohn said.

Ms. Alonzo declined to pay workers more to adopt the additional skills or night work, saying, “We want people to work here because it’s your bag.”

Finding Favorite Things

For behavior management, Beatitudes plumbs residents’ biographies, soothing one woman, Ruth Ann Clapper, by dabbing on White Shoulders perfume, which her biographical survey indicated she had worn before becoming ill. Food became available constantly, a canny move, Ms. Dougherty said, because people with dementia might be “too distracted” to eat during group mealtimes, and later “be acting out when what they actually need is food.”

Realizing that nutritious, low-salt, low-fat, doctor-recommended foods might actually discourage people from eating, Ms. Alonzo began carrying chocolate in her pocket. “For God’s sake,” Ms. Mullan said, “if you like bacon, you can have bacon here.”

Comforting food improves behavior and mood because it “sends messages they can still understand: ‘it feels good, therefore I must be in a place where I’m loved,’ ” Ms. Dougherty said.

Now, when Maribeth Gallagher, Beatitudes’ dementia program director, learns someone’s favorite foods, “I’m going to pop that on your tongue, and you’re going to go ‘yum,’ ” she said. “Isn’t that better than an injection?”

Beatitudes also changed activity programming. Instead of group events like bingo, in which few residents could actually participate, staff members, including housekeepers, conduct one-on-one activities: block-building, coloring, simply conversing. State regulators initially objected, saying, “Where’s your big group, and what you’re doing isn’t right and doesn’t follow regulations,” Ms. Alonzo said.

Ms. Mullan said, “I don’t think we ever got cited, but it was a huge fight to make sure we didn’t.”

These days, hundreds of Arizona physicians, medical students, and staff members at other nursing homes have received Beatitudes’ training, and several Illinois nursing homes are adopting it. The program, which received an award from an industry association, the American Association of Homes and Services for the Aging, also appears to save money.

Arlene Washington’s family moved her to Beatitudes recently, pulling her from another nursing home because of what they considered inattentive and “improper care,” said her husband, William. Mrs. Washington, 86, was heavily medicated, tube fed and unable to communicate, “like she had no life in her,” said Sharon Hibbert, a friend.

At Beatitudes, Dr. Gillian Hamilton, administrative medical director, said she found Mrs. Washington “very sedated,” took her off antipsychotics, then gradually stopped using the feeding tube. Now Mrs. Washington eats so well she no longer needs the insulin she was receiving. During a recent visit, she was alert, even singing a hymn.

That afternoon, Ms. Nance, in her wheelchair, happily held her baby doll, which she named Benjamin, and commented about raising her sons decades ago.

Ms. Alonzo had at first considered the doll an “undignified” and demeaning security blanket. But Ms. Gallagher explained that “for a lot of people who are parents, what gives them joy is caring for children.”

“I was able,” Ms. Gallagher said, “to find Margaret’s strength.”

Ms. Gallagher said she learned when approaching Ms. Nance to “look at her baby doll, and once I connect with the doll, I can look at her.”

She squatted down, complimented Benjamin’s shoes, and said, “You’re the best mom I know.”

Ms. Nance nodded earnestly.

“It’s good to know,” Ms. Nance said, “that somebody knows that you care.”


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