Caregiver ‘Boot Camp” for Dementia Patients

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Boot camp alzheimer caregiversGary Carmona thought he could do it all. He has headed companies and chaired nonprofit boards. But since his wife was diagnosed with dementia, Gary, 77, has felt exceedingly overwhelmed. 

 

 

“I really see myself crashing at times,” he said. “In my mind, I’m saying, ‘You know, I can’t really handle all this.’”

There was the time his wife, Rochelle, wandered outside and fell down. And the time she boiled water and walked away, leaving the burner on.

“I’m always double-, triple-, quadruple-checking everything that she’s around,” he said.

Carmona was among about 25 people who went to a Los Angeles-area adult day care center on a recent Saturday for a daylong “caregiver boot camp.” In the free session, funded in part by the Archstone Foundation, people caring for patients with Alzheimer’s or another form of dementia learned how to manage stress, make their homes safe and handle difficult patient behaviors. They also learned how to keep their loved ones engaged, with card games, crossword puzzles or music.

Doctors and researchers increasingly recognize that caring for people with dementia compromises the physical and mental health of the caregivers. And that, in turn, jeopardizes the well-being of the people in their care. Some studies have shown that the burden on caregivers may increase the likelihood that the loved ones in their charge will be placed in a nursing home.

“People with Alzheimer’s who have stressed caregivers have been shown to have poor outcomes,” said Zaldy Tan, the medical director of the UCLA Alzheimer’s and Dementia Care Program who created the boot camp. “Their caregivers have essentially thrown in the towel.”

People with dementia are also more likely to visit the emergency room and be hospitalized if their caregivers are not prepared for the task, Tan said.

That’s one of the main reasons why UCLA Health and its geriatrics division started its caregiver boot camps in 2015.

UCLA holds four boot camps a year at community and senior centers in Southern California and hopes to expand over the next year to meet the growing need. About 5 million Americans, 1 in 10 people over 65, have Alzheimer’s disease — a number that could balloon to 16 million by 2050, according to the Alzheimer’s Association.

Similar caregiver training programs have taken place in New Jersey, Florida and Virginia.

Tan started the recent session by explaining the progression of dementia, noting that in its later stages people often do not remember their loved ones.

“Do they all reach that stage?” asked one woman, who takes care of her sister.

“They do, if they live long enough,” Tan said. “I know it’s heartbreaking.”

He also warned the group that their actions can inadvertently provoke anxiety or aggression in their loved ones.

“Many times, when you see someone shift from being calm to agitated, happy to angry, typically there’s a trigger,” Tan said. “A trigger is just like a trigger on a gun. Something is pushed and you get a reaction.” He told them that as caregivers they were in the best position to identify and avoid those triggers.

Leon Waxman, who also attended the boot camp, said he tries not to upset his wife, Phyllis. But sometimes she gets angry, as she did the day he dropped her off for day care while he attended the session for caregivers.

Taking care of Phyllis the past few years has been trying, he said. She can still dress herself, but she gets easily confused and can no longer make decisions.

“The hardest part for me is I don’t have my wife anymore,” said Waxman, who has been married to Phyllis for 58 years. “She’s not the same person she was 10 years ago.”

During the boot camp, recreational therapist Peggy Anderson demonstrated a game caregivers could play at home: music bingo. Each square had the name of a song, and she played music.

“What’s this song?” Anderson asked the group.

“Bye blackbird,” one yelled out.

“If you have that one, mark it off,” she said.

Anderson said that even people with dementia can sometimes recognize songs and read their titles. “There’s a lot of good things that come out of this activity — just listening to music, clapping your hands, reminiscing,” she said.

In another room, occupational therapist Julie Manton explained how to prevent people with dementia from falling. She advised the group to ensure their homes have good lighting and bed rails, as examples. She also urged them to remove throw rugs.

Manton warned the participants that their loved ones might wander off and suggested the use of monitoring devices. “The key thing is to know where your loved one is at all times,” she said.

 

You’re Not Just ‘Growing Old’ If This Happens To You

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doctor-taking-blood-pressureWhen Dr. Christopher Callahan examines older patients, he often hears a similar refrain. “I’m tired, doctor. It’s hard to get up and about. I’ve been feeling kind of down, but I know I’m getting old and just have to live with it.”

This fatalistic stance relies on widely-held but mistaken assumptions about what constitutes “normal aging.”

In fact, fatigue, weakness and depression, among several other common concerns, aren’t to-be-expected consequences of growing older, said Callahan, director of the Center for Aging Research at Indiana University’s School of Medicine.

Instead, they’re a signal that something is wrong and a medical evaluation is in order.

“People have a perception, promulgated by our culture, that aging equals decline,” said Dr. Jeanne Wei, a geriatrician who directs the Donald W. Reynolds Institute on Aging at the University of Arkansas for Medical Sciences.

“That’s just wrong,” Wei said. Many older adults remain in good health for a long time and “we’re lucky to live in an age when many remedies are available.”

Of course, peoples’ bodies do change as they get on in years. But this is a gradual process. If you suddenly find your thinking is cloudy and your memory unreliable, if you’re overcome by dizziness and your balance is out of whack, if you find yourself tossing and turning at night and running urgently to the bathroom, don’t chalk it up to normal aging.

Go see your physician. The earlier you identify and deal with these problems, the better. Here are four common concerns that should spark attention — only a partial list of issues that can arise:

Fatigue. You have no energy. You’re tired all the time.

Don’t underestimate the impact: Chronically weary older adults are at risk of losing their independence and becoming socially isolated.

Nearly one-third of adults age 51 and older experience fatigue, according to a 2010 study in the Journal of the American Geriatrics Society.  (Other estimates are lower.) There are plenty of potential culprits. Medications for blood pressure, sleep problems, pain and gastrointestinal reflux can induce fatigue, as can infections, conditions such as arthritis, an underactive thyroid, poor nutrition and alcohol use.

All can be addressed, doctors say. Perhaps most important is ensuring that older adults remain physically active and don’t become sedentary.

“If someone comes into my office walking at a snail’s pace and tells me ‘I’m old; I’m just slowing down,’ I say no, that isn’t right,” said Dr. Lee Ann Lindquist, a professor of geriatrics at Northwestern University’s Feinberg School of Medicine in Chicago.

“You need to start moving around more, get physical therapy or occupational therapy and push yourself to do just a little bit more every day.”

Appetite loss. You don’t feel like eating and you’ve been losing weight.

This puts you at risk of developing nutritional deficiencies and frailty and raises the prospect of an earlier-than-expected death. Between 15 and 30 percent of older adults are believed to have what’s known as the “anorexia of aging.”

Physical changes associated with aging — notably a reduced sense of vision, taste and smell, which make food attractive — can contribute. So can other conditions: decreased saliva production (a medication-induced problem that affects about one-third of older adults); constipation (affecting up to 40 percent of seniors); depression; social isolation (people don’t like to eat alone); dental problems; illnesses and infections; and medications (which can cause nausea or reduced taste and smell).

If you had a pretty good appetite before and that changed, pay attention, said Dr. Lucy Guerra, director of general internal medicine at the University of South Florida.

Treating dental problems and other conditions, adding spices to food, adjusting medications and sharing meals with others can all make a difference.

Depression. You’re sad, apathetic and irritable for weeks or months at a time.

Depression in later life has profound consequences, compounding the effects of chronic illnesses such as heart disease, leading to disability, affecting cognition and, in extreme cases, resulting in suicide.

A half century ago, it was believed “melancholia” was common in later life and that seniors naturally withdrew from the world as they understood their days were limited, Callahan explained. Now, it’s known this isn’t so. Researchers have shown that older adults tend to be happier than other age groups: only 15 percent have major depression or minor variants.

Late-life depression is typically associated with a serious illness such as diabetes, cancer, arthritis or stroke; deteriorating hearing or vision; and life changes such as retirement or the loss of a spouse. While grief is normal, sadness that doesn’t go away and that’s accompanied by apathy, withdrawal from social activities, disturbed sleep and self-neglect is not, Callahan said.

With treatments such as cognitive behavioral therapy and anti-depressants, 50 to 80 percent of seniors can expect to recover.

Weakness. You can’t rise easily from a chair, screw the top off a jar, or lift a can from the pantry shelf.

You may have sarcopenia — a notable loss of muscle mass and strength that affects about 10 percent of adults over the age of 60. If untreated, sarcopenia will affect your balance, mobility and stamina and raise the risk of falling, becoming frail and losing independence.

Age-related muscle atrophy, which begins when people reach their 40s and accelerates when they’re in their 70s, is part of the problem.  Muscle strength declines even more rapidly — slipping about 15 percent per decade, starting at around age 50.

The solution: exercise, including resistance and strength training exercises and good nutrition, including getting adequate amounts of protein. Other causes of weakness can include inflammation, hormonal changes, infections and problems with the nervous system.

Watch for sudden changes. “If you’re not as strong as you were yesterday, that’s not right,” Wei said. Also, watch for weakness only on one side, especially if it’s accompanied by speech or vision changes.

Taking steps to address weakness doesn’t mean you’ll have the same strength and endurance as when you were in your 20s or 30s. But it may mean doctors catch a serious or preventable problem early on and forestall further decline.

Is There A Medicare Doctor In The House?

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Medical Nurse

Searching for ways to save money and improve care, Medicare officials are returning to an old-fashioned idea: house calls. 

But the experiment, called Independence at Home, is more than a nostalgic throwback to the way medicine was practiced decades ago when the doctor arrived at the patient’s door carrying a big black bag. Done right and paid right, house calls could prove to be a better way of treating very sick, elderly patients while they can still live at home.

“House calls go back to the origins of medicine, but in many ways this is the next generation,” said Dr. Patrick Conway, who heads the Center for Medicare and Medicaid Innovation, which oversees Independence at Home.    

In the first year of the experiment, Housecall Providers of Portland, Oregon, which had been operating at a loss, saved Medicare an average of almost $13,600 for each patient in the pilot project. Its share of the savings was $1.2 million. The house calls practice at MedStar Washington Hospital Center in Washington, D.C., cut the cost of care an average of $12,000 per patient.

Medicare reported overall savings of $25 million in the pilot’s first year, officials reported June 2015. From that money, nine practices earned bonuses totaling nearly $12 million, including a $2.9 million payment to a practice in Flint, Michigan.

After three practices dropped out, there are now 14 around the country participating in the project — including five sites run by the Visiting Physicians Association.

By all accounts, saving any money on these patients is a surprise. Independence at Home targets patients with complicated chronic health problems and disabilities who are among the most expensive Medicare beneficiaries. But a key study, published in 2014 in the Journal of the American Geriatrics Society, found that primary care delivered at home to Medicare patients saved 17 percent in health spending by reducing their need to go to the hospital or nursing home.

In addition to Medicare’s usual house calls payment, doctors in the Independence at Home project get a bonus if patients have at least 5 percent lower total Medicare costs than what is expected for a similar group of beneficiaries. Medicare keeps the first 5 percent of the savings and the house call providers can receive the rest. The doctors must meet at least three of the six performance goals — such as reducing emergency room visits and hospital readmissions, and monitoring patients’ medications for chronic conditions such as diabetes, asthma and high blood pressure.

Under the law creating the program, practices could join only if they make house calls to at least 200 patients with traditional Medicare who have been hospitalized and received rehab or other home health care within the past year. These patients also must have trouble with at least two activities of daily living, such as dressing or eating. The health care providers must be available 24 hours a day, seven days a week. They make visits at least once a month to catch any new problems early, and more often if patients are sick or there’s an emergency.

“You never know what you’re walking into,” said Terri Hobbs, Housecall Providers’ executive director. “This is a very sick group of people, with multiple chronic conditions, taking multiple medications and [they] have a very long problem list.” About half the Portland patients have some degree of dementia.

Yet the Medicare reimbursement for house calls is about the same as an office visit and doesn’t cover travel time or the extra time needed to take care of complex patients. It’s not enough to convince most doctors “to leave the relatively comfortable controlled environment of an office or hospital to do this sort of work,” said Dr. William Zafirau, medical director for Cleveland Clinic’s house calls program in Ohio, which has 200 patients in the Medicare pilot and plans to add 150 more.

A house calls doctor can see only five to seven patients a day. One reason is that a house call visit can take longer than an office visit, even after taking travel time into account. After Dr. Zafirau examines his patients, he also takes a look around the home. He may open their refrigerators to make sure they have enough food or see if medicine bottles are running low. He may arrange home-delivered meals or other social services.

How people are functioning is often the best indicator of their overall health.

The care can also extend to other professional services. Portland’s Housecalls Providers hired a nurse and a social worker to serve as an advocate for patients who enter the hospital. When the patient returns home, they visit. For example, an antibiotic, a hospital bed or oxygen.

Hospital admissions dropped so significantly that Hobbs expanded the transition team to serve house calls patients who were not part of the pilot program when they were hospitalized.

A similar team serves MedStar Washington Hospital Center’s house calls patients, said Dr. Eric De Jonge, director of geriatrics at the hospital and president-elect of the American Academy of Home Care Medicine. “When patients go to the hospital, there is very little contact from the primary care doctor with the hospital care,” he said. Independence at Home “is actually pushing back to reverse that trend.”

Ironically, Medicare doesn’t pay for the transition team even though Hobbs said it saves Medicare “a tremendous amount of money.”

Congress has authorized the Independence at Home program through October 2017, but some lawmakers hope there is enough support to extend it nationwide.  If not, Conway said his agency will not be able to continue the program.

 

Seniors Tell Medical Students Their Needs From Doctors

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Belle LikoverWhen doctors told Robert Madison his wife had dementia, they didn’t explain very much. His successful career as an architect hardly prepared him for what came next.

“A week before she passed away her behavior was different, and I was angry because I thought she was deliberately not doing things,” Madison, now 92, told a group of nearly 200 students at Case Western Reserve School of Medicine.

“You are knowledgeable in treating patients, but I’m the patient, too, and if someone had said she can’t control anything, I would have been better able to understand what was taking place.”

Belle Likover (pictured) recounted for the students how she insisted when her husband was dying of lymphoma that doctors in the hospital not make decisions without involving his oncologist. “When someone is in the hospital, they need an advocate with them at all times,” said Likover, who turns 96 this month [October 2015]. “But to expect that from families when they are in crisis is expecting too much. The medical profession has to address that.”

Madison and Likover were among six people all over the age of 90 invited to talk to the second-year medical students. The annual panel discussion, called “Life Over 90,” is aimed at nudging students toward choosing geriatric medicine, the primary care field that focuses on the elderly. It is among the lowest-paid specialties, and geriatricians must contend with complex cases that are time consuming and are often not reimbursed adequately by Medicare or private insurance. And their patients can have diseases that can only be managed but never cured.

Students often are attracted to more lucrative specialties such as orthopedics or cardiology, said Jeremy Hill, who was in the audience. One undeniable factor is money: the 35-year-old North Carolina native may owe as much as $300,000 when he graduates, enough – he is quick to point out – to buy “a nice-sized house.”

Yet Hill is one of the few Case students who say they are leaning toward choosing geriatrics.

The American Geriatrics Society estimates that the nation will require about 30,000 geriatricians by 2030 to serve the 30 percent of Americans over age 65 with the most complicated medical problems. Yet there are about 7,000 geriatricians currently practicing. To meet the needs, the society estimates medical schools would have to train at least 1,500 geriatricians annually between now and 2030, or five times as many as last year.

The low number of geriatricians is not surprising considering that their average salary was $184,000 in 2010, almost three times lower than what radiologists earned, the American Geriatrics Society has reported.

Elizabeth O’Toole, a geriatrician and med school professor who arranged the panel discussion, acknowledged in her introduction that most students were interested in other specialties. Yet she warned them not to overlook the needs and outlooks of older patients.

“No matter what you’ll be doing, you are going to be working with these people,” she said.  More than 400,000 people 80 years old and older received knee replacements last year, 35 percent of men over 80 and 19 percent of women have coronary heart disease and the most common medical procedure among people over 65 is cataract surgery. Successful outcomes depend on the patient’s cooperation and that, she said, requires “an understanding of who the patient is.”

Students who braced themselves for a solemn litany of medical problems from the panel were in for a surprise. It wasn’t just what the visitors said that made an impression, but how they said it.

The group offered the students advice, telling the doctors-to-be to look at their patients instead of typing notes into a computer, take more time with older patients and answer their questions.

“Having to see so many patients a day is tragic,” said Simon Ostrach, 92, a professor emeritus of engineering at Case, who recalled being rushed through an appointment with an orthopedic surgeon who did little for “excruciating pain” after his hip replacement.

When it was her turn, Likover (pictured) pushed back her chair, stood up and had no need for the microphone she was offered.

“Getting old is a question of being able to adapt to your changing life situation, having a little less energy, not being quite as healthy as were you were before,” said Likover, a retired social worker. Four years ago, she was hospitalized twice for congestive heart failure until she learned how to manage the disease through diet. She also has an occasional irregular heart beat and only recently began walking with a cane. She swims at least three times a week, serves on several committees addressing seniors’ issues, and is a Jon Stewart fan because “getting a laugh every day is very, very helpful.”

“I have lived a very good and hopefully useful life and death does not concern me. It is going to happen,” she told the students. “And I think that kind of outlook, not worrying about every little ache and pain makes a big difference and a very happy life.”

“That’s a perfect seque to my story,” said Ostrach. “I attribute my longevity to smoking, drinking and overeating,” he told the students. And doctors who tried to reform him “are all long dead and gone.” He was an athlete in college, wrestling and playing tennis, “but as I got past 60, I found that listening to opera, smoking good cigars and having a little cognac was much more pleasant.” All in moderation, he added.

Efforts to introduce relatively healthy older adults to medical students can “reduce the sense of futility and show [the students] that there are real people with real lives who can benefit from quality health care,” said Chris Langston, program director at the John A. Hartford Foundation, which focuses on aging and health who has been analyzing the trend for the past several years.

But Jeremy Hill and the roughly two dozen members of Case’s “geriatric interest group” are the exception. For them, the challenge of a complicated patient — “figuring out the puzzle” as one student put it — is what makes geriatric medicine worthwhile, even when a cure is out of reach.

“I have such respect and admiration for this population, and if I could somehow give them one extra good day they would not have had otherwise,” said Hill, who then paused for a moment, “I would be privileged to work with them.”

After the session, Hill went up to Ostrach, who had said he’s been lonely since his wife died. After chatting for a few minutes, he told Ostrach, “If you’d like to have lunch sometime, please call me,” and handed him a scrap of paper with his phone number.