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.

 

New Federal Rules for Home Health Agencies

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Man and CaretakerHome health agencies will be required to become more responsive to patients and their caregivers under the first major overhaul of rules governing these organizations in almost 30 years. 

The federal regulations, published in January 2017, specify the conditions under which 12,600 home health agencies can participate in Medicare and Medicaid, serving more than 5 million seniors and younger adults with disabilities through these government programs.

They strengthen patients’ rights considerably and call for caregivers to be informed and engaged in plans for patients’ care. These are “real improvements,” said Rhonda Richards, a senior legislative representative at AARP.

Home health agencies also will be expected to coordinate all the services that patients receive and ensure that treatment regimens are explained clearly and in a timely fashion.

The new rules are set to go into effect in July 2017, but they may be delayed as President Donald Trump’s administration reviews regulations that have been drafted or finalized but not yet implemented. The estimated cost of implementation, which home health agencies will shoulder: $293 million the first year and $234 million a year thereafter.

While industry lobbying could derail the regulations or send them back to the drawing board, that is not expected to happen, given substantial consensus with regard to their contents. More likely is a delay in the implementation date, which several industry groups plan to request.

“There are a lot of good things in these regulations, but if it takes agencies another six or 12 months to prepare let’s do that, because we all want to get this right,” said William Dombi, vice president for law at the National Association for Home Care & Hospice (NAHC).

Home health services under Medicare are available to seniors or younger adults with disabilities who are confined to home and have a need, certified by a physician, for intermittent skilled nursing services or therapy, often after a hip replacement, heart attack or a stroke.

Patients qualify when they have a need to improve functioning (such as regaining the strength to walk across a room) or maintain abilities (such as retaining the capacity to get up from a chair), even when improvement is not possible. These services are not for patients who need full-time care because they are seriously ill or people who are dying.

Several changes laid forth in the new regulations have significant implications for older adults and their caregivers:

Patient-Centered Care

In the past, patients have been recipients of whatever services home health agencies deemed necessary, based on their staffs’ evaluations and input from physicians. It was a prescriptive “this is what you need and what we’ll give you” approach.

Now, patients will be asked what they feel comfortable doing and what they want to achieve, and care plans will be devised by agencies with their individual circumstances in mind.

“It’s much more of a ‘help me help you’ mentality,” said Diana Kornetti, an industry consultant and president of the home health section of the American Physical Therapy Association.

While some agencies have already adopted this approach, it’s going to be a “sea change” for many organizations, said Mary Carr, NAHC’s vice president for regulatory affairs.

Patient Rights

For the first time, home health agencies will be obligated to inform patients of their rights — both verbally and in writing. And the explanations must be communicated clearly, in language that patients can understand.

Several new rights are included in the regulations. Notably, patients now have a right to receive all the services deemed necessary in their plans of care. These plans are devised by agencies to address specific needs approved by a doctor, such as speech therapy or occupational therapy, and usually delivered over the course of a few months, though sometimes they last much longer. Also, patients must be informed about the agency’s initial comprehensive assessment of the patient’s needs and goals, as well as all subsequent assessments.

A patient’s rights to lodge complaints about treatment and be free from abuse, which had already been in place, are described in more detail in the new regulations. The government surveys home health agencies every three years to make sure that its rules are being followed.

NAHC officials said they planned to develop a “notice of rights” for home health care agencies, bringing greater standardization to what has sometimes been an ad hoc notification process.

Caregiver Involvement

For the first time, agencies will be required to assess family caregivers’ willingness and ability to provide assistance to patients when developing a plan of care. Also, caregivers’ other obligations — for instance, their work schedules — will need to be taken into account.

Previously, agencies had to work with patients’ legal representatives, but not “personal representatives” such as family caregivers.

“These new regulations stress throughout that it’s important for agencies to look at caregivers as potential partners in optimizing positive outcomes,” said Peter Notarstefano, director of home and community-based services for LeadingAge, a trade group for home health agencies, hospices and other organizations.

Plans Of Care

Now, any time significant changes are made to a patient’s plan of care, an agency must inform the patient, the caregiver and the physician directing the patient’s care.

“A lot of patients tell us ‘I’ve never seen my plan of care; I don’t know what’s going on; the agency talks to my doctor but not to me,’” said Kathleen Holt, an attorney and associate director of the Center for Medicare Advocacy. The new rules give “patients and the family a lot more opportunity to have input,” she added.

In another notable change, efforts must be made to coordinate all the services provided by therapists, nurses and physicians involved with the patient’s care, replacing a “siloed” approach to care that has been common until now, Notarstefano said.

Discharge Protections

Allowable reasons for discharging a patient are laid out clearly in the new rules and new safeguards are instituted. For instance, an agency cannot discontinue services merely because it does not have enough staff.

The government’s position is that agencies “have the responsibility to staff adequately,” Carr of NAHC said. In the event a patient worsens and needs a higher level of services, an agency is responsible for arranging a safe and appropriate transfer.

“Agencies in the past have had the ability to just throw up their hands and say ‘We can’t care for you or we think we’ve done all we can for you and we need to discharge you,’” Holt said. Now a physician has to agree to any plan to discharge or transfer a patient, and “that will offer another layer of protection.”

Medical Technology Advances and Long-Term Care

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Couple on cruiseMedical advances have most definitely increased the number of years we live and have decreased the number of early sudden deaths. For example, identifying asymptomatic diseases through screening has helped to reduce their incidence and severity.

The overall results of medical advances are that:

 People are living longer and requiring additional years of care. 

 Hospital stays are shorter because more services are available at home.

 People are surviving more accidents, not always with full recovery, creating a

new group of LTC patients.

Some researchers argue that medical advances have increased life expectancy but have not delayed the onset of illness, predicting that declining death rates may actually increase LTC needs. That is, more people are living long enough to develop age-related conditions such as dementia, or they are living longer with existing disabilities and chronic conditions.

Advances in pharmacology and pharmaceuticals also impact the need for long-term care. These advances have not only reduced the symptoms of diseases but also have slowed their progression, thereby increasing longevity. However, increased longevity may necessitate periods of longer care.

The irony is that as medical advances help people live longer, the likelihood increases that long-term care will be necessary.

What is noninstitutional care? 

The U.S. Department of Health and Human Services reports that 31 percent of all caregivers are employed outside the home. This type of care is referred to as noninstitutional care.

Note that employed caregivers spend no less time on elder care than those who are not employed outside the home. Workers who provide elder care spend approximately four hours a day on caregiving in addition to their other responsibilities.

Consumer Attitudes and Understanding

Another social factor associated with the growing long-term care need is current consumer awareness and attitude. Generally, the public at large does not have a good understanding of the long-term care need, including why and how to plan for long-term care. Many simply deny that they will need long-term care; others believe, incorrectly, that Social Security, Medicare, or their existing health insurance will cover the costs.

They do not see long-term care as something one needs to plan for in advance, such as they would retirement. This attitudinal “disconnect” also explains one of the reasons why people may not consider the purchase of long-term care insurance.

According to a report issued by the U.S. Department of Health and Human Services, coverage purchased to cover acute medical care far surpasses the coverage purchased to cover long-term custodial care. Whereas almost all older individuals are protected from high acute medical care costs through Medicare and private Medigap insurance, a very small percentage have purchased long-term custodial care insurance.

This report cited the following, among others, as key factors limiting demand for long-term care insurance:

lack of information – Many underestimate the likelihood of requiring LTC services and the potential costs of those services.

 misperception of public and private programs – Many people believe that Medicare, retiree health plans, or Medicare supplement insurance covers LTC services. This is not the case.

 delayed preparation for/denial of long-term care needs – Many do not think about preparing for long-term care needs until the need arises. At that point, they may be too old or disabled to purchase insurance.

 long lag time between purchase and benefit payment – Long-term care insurance must be purchased before it is needed; often, this means a period of many years between purchase and when benefits are likely to be paid. Consumers prefer to spend their current dollars on coverage that provides a more near-term benefit, such as Medigap policies.

affordability – Many of today’s older consumers have low incomes and cannot afford long-term care premiums.

perception of need – Some consumers decide they do not need long-term care insurance because they have too few assets to protect or have family and friends available to provide care.

Consumer attitudes and perceptions notwithstanding, long-term care is a growing reality. It is also a very expensive reality.

The Cost of Long-Term Care

The medical, personal, and social services necessary because of an accident, a chronic illness, a disability, or simply the phenomenon of aging—services associated with long-term care—are among the most expensive of health care costs, especially considering the great numbers of people affected.

The actual cost of long-term care depends on where the care is received, what type of provider administers the care, and how long the care is required.

Some people require minimal assistance with only a few activities of daily living (ADLs) for a limited time.

Others require skilled nursing facility care for an extended period.

Unfortunately, no one can predict who will be stricken with the need for long-term care, what type of care will be needed, or how long the care will be necessary.

Planning for Long-Term Care

Given the likelihood of needing long-term care and the tremendous cost that this care entails, it is important that individuals plan for it—and the sooner the better. Certainly, there are barriers. For example, people tend not to think about becoming older and needing care, or they don’t anticipate that they will ever need care themselves; they resist the idea of becoming dependent.

They may believe [erroneously] that Medicare or their current health insurance will cover the cost of this type of sustained, ongoing care. They may find it difficult to raise this issue with their loved ones. Or they may underestimate the time and toll that future caregiving will demand of their family or friends.

Some are not aware of the tremendous costs of this care or how it is paid. Some may think of long-term care simply as nursing home care and assume that the “government” will cover the cost. Some are confronted with conflicting financial priorities. And some people may simply not know where or how to begin the planning.

But for every reason why people do not plan in advance for long-term care, there is a reason why they should:

Advanced planning for future care needs will allow for greater independence and choice as to where and how the care is delivered.

 Advanced planning can mean greater financial security, not only for those who may need care but also for their family and loved ones.

 Advanced planning can ease the financial and emotional toll on one’s family and release them from the burden of providing the care, if and when it is needed.

 Advanced planning will avoid the uncertainty, confusion, and mistakes that could arise in the event of a health care need.

 Advanced planning will promote a continued quality of life, as the person defines it, when care is needed.

Independence – What Older People Want

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Senior MenWe already have an idea of what older people want. A study from the National Conference of State Legislatures and AARP, plus other studies, confirm that the vast majority of us want to live in our homes and communities as we age. And, if possible, avoid dependence on others and institutionalization. 

Meeting this deeply personal goal requires that we design and provide good care in our hospitals and clinics, and expand that care beyond traditional boundaries. It requires the involvement of both health care and community-based service providers; a skilled paid workforce; and a well-supported, family-based “care force.” It also, of course, requires the correct blend of policies and funding.

This is an increasingly urgent concern. A person turns sixty-five every eight seconds, and according to Census numbers, the population of people age eighty-five and older, which doubled in the past thirty years, is projected to almost triple to more than 14 million people by 2040.

One obstacle we face is that our country spends almost twice as much on health care as on social services. To enable more older people to get the care and the outcomes they seek, we must find ways to balance our investment between these types of services, work together across sectors, and use our resources in forward-looking ways.

A good framework for this approach can be found in the work of the Institute of Medicine’s Forum on Aging, Disability, and Independence. A collaboration of the National Academies of Sciences, Engineering, and Medicine, the forum provides a critically needed and neutral venue to bring together aging and disability stakeholders from around the country, accelerate the transfer of research to practice and policy, and identify levers of change.

Supporting this type of transition and building the coalitions to carry it out are, in many ways, the essential role of philanthropy. The John A. Hartford Foundation, is committed to promoting better care for older people. To help more of us remain independent, they are supporting research and evidence-based programs in two broad areas: integrating community-based services with traditional health care and providing more coordinated care focused on older people’s own goals.

Supporting family and community resources…

Our health care system has been developed to perform life-saving and critically needed interventions and procedures, such as stents, transplants, radiation, and chemotherapy. But such high-tech care, while important, is often not well matched with the wants and needs of older adults, particularly those who require help with their personal care and daily activities.

A much more common need for older people and their families is coping with multiple chronic conditions and the complications they can bring. Clinics and hospitals need to be better designed to support this chronic care, but the vast majority of care actually takes place in our homes and communities. To remain at home and successfully manage one’s chronic conditions, many more older adults need excellent long-term services and supports—such as transportation, mobility aids, housing modifications, and accessible home care. Without these, they struggle.

Their caregivers need help, as well, and the Institute of Medicine’s Study on Family Caregiving for Older Adults, which was released in the spring of 2016 with funding from the John A. Hartford Foundation and fourteen other sponsors, should create a blueprint for how we can best support the family and friends who provide unpaid care worth an estimated $470 billion annually. 

The Affordable Care Act and the new emphasis on value-based payment to accountable care organizations are changing incentives and placing a new focus on the importance of social services and supports for patients and caregivers alike. But how do we best structure and provide these services?

The John A. Hartford Foundation, is supporting work in California by the Partners in Care Foundation, and in Massachusetts by Elder Services of Merrimack Valley and Hebrew SeniorLife, to create more integrated care systems that link community-based, social service agencies to the health care sector.

They are also working with the federal Administration for Community Living, the SCAN Foundation, and the Tufts Health Plan Foundation to help representatives of the aging services network in eleven communities build their business acumen so they can work more effectively with health care providers, fill in service gaps, and meet the needs of older adults.

Reshaping care delivery, promoting teams…

Good care must be team care, and good teams don’t just happen. The foundation has a long-standing commitment to improving team care—for example, it has supported a Geriatric Interdisciplinary Team Training program at several universities and team-based practice models in clinic, hospital, and long-term care settings.

Meeting the whole range of health and social needs of frail older adults in each of these settings requires care coordination, reliable communication among team members (who may be in other practices or specialties or outside of the formal health system), and technology that promises to facilitate and monitor care.

The Mobile Acute Care Team (MACT) model is a good example. MACT is a hospital-at-home approach for older adults, where a team of nurses, physicians, social workers, and allied health care professionals provide acute-level care through home visits and monitoring. Studies have found that this approach lowers costs by nearly one-third and reduces infections and other complications. It is highly rated by patients and caregivers alike. Initially developed at Johns Hopkins University with support from the John A. Hartford Foundation, MACT is now being tested at Mount Sinai Medical Center in New York City with a substantial amount of funding from the federal Center for Medicare and Medicaid Innovation.

Making these kinds of services widely available will require significant changes in how care is delivered, and that is not easy. But with older adults becoming an ever-larger part of our population and our health care system continuing to experience rapid change because of market and policy forces, the focus must be on delivering care that people actually want. By working together, services and supports can be provided that meet people where they are and honor their goals. That’s a definition of better care.

Awake And Safe All Night Despite Dementia

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In their Manhattan apartment, Josephina is trying to coax her 84-year-old mother, Brunhilda, to get ready to go out. As she does most nights, Josephina makes up a story to get her mother, who has dementia, to cooperate.

In Spanish, Josephina asks her mother if she would rather go to Miami or the Dominican Republic. Her mother says she wants to go to the Dominican Republic, and then Josephina helps her mother gather her things and escorts her downstairs to a waiting van. The driver will take her mother to the Elderserve At Night program at the Hebrew Home At Riverdale in the Bronx. It’s a kind of day camp – but at night, for people like Brunhilda who suffer from Alzheimer’s disease.

Josephina says her mother was once a proud, hard-working immigrant who raised four children on her own, but she has changed. “Her memory has been totally lost. She’s very disoriented,” Josephina says. “She doesn’t communicate at all.”

For months, Brunhilda would sleep during the day and be up much of the night wandering around the apartment. Her daughter was too afraid to sleep – afraid her mother might fall and hurt herself or even try to leave the apartment.

“She wanted to sweep the floor. She wanted to watch TV. She wanted to clean the bathroom,” Josephina remembers. “She wanted to go out. This is at one, two o’clock in the morning.”

But now Josephina is finally getting some sleep – and her mother is being well cared for, along with about 40 other people, seven nights a week. Activities may include arts and crafts, cooking, yoga or Zumba, and even live performances. On the night we visited, Juan Ortega played American and Spanish favorites on his synthesizer.

Though it looks like entertainment, each activity has a therapeutic benefit for memory-compromised people, says Deborah Messina, who runs the overnight program. She described a common problem among dementia patients known as “sundowning.” It is thought to affect about 20 percent of Alzheimer’s patients.

“Their day is our night and vice versa, and they are confused about it,” Messina says. “It is usually at dusk where an agitation comes, a confusion comes.”

Many people with dementia are more alert at night than they are all day – just when their caregivers need to sleep. Rather than try to alter this mismatch, Elderserve At Night embraces it.

The program is the brainchild of David Pomeranz, the executive director of the Hebrew Home, who opened the program in 1996. He says the idea came to him after hearing heartbreaking stories from struggling families.

“People were sleeping in front of doorways because they were concerned that mom or dad would wander out of the house,” Pomeranz says.

Those families desperately needed a safe place for their loved ones at night – and a decent night’s sleep. And the Hebrew Home set out to meet that need.

It’s a similar philosophy – to meet clients’ needs wherever they may be – held by the therapists and social workers who now staff Elderserve. “Here, their behaviors are normalized,” Pomeranz explains.

“Everything is OK. Activities are structured for them to be successful. They eat, they relax – they can be themselves. To us, this is who they are. We’re not the family members who are dealing with that incredible loss of seeing someone who was and isn’t any more.”

The program is covered by some private insurers and by New York Medicaid, the federal-state program for poor and disabled people. To the extent that it can keep people out of nursing homes, it can save money.

Medicaid pays a typical nursing home in New York about $320 per day versus $200 for the overnight program. But so far, few, if any, other overnight programs exist solely for people with dementia. Pomeranz thinks the idea hasn’t caught on with other nursing homes because it is difficult to find staff who are willing to work the overnight shift. It was also important to get Medicaid and other insurers to reimburse for the program, and that funding has not been pursued in every state.

Elderserve At Night tries to serve its clients even as their conditions worsen. Next door to the room where Brunhilda and others are dancing and enjoying the live music, it feels like another universe. The music is soft, the lights are low and a subtle scent of lavender is in the air. People with more advanced disease spend the evening here. Some are sitting around a table, each with a caseworker, who helps them work with blocks and basic puzzles.

Several other people are slumped in wheelchairs, getting hand massages from the social workers. Though their faces look expressionless, they seem calm. For people with advanced dementia who might otherwise become agitated at night, this room is a sanctuary, says Messina.

“We’re engaging them on their level. And being able to do that might be through touch, it might be through sound, it might be through scent,” she says. “It works for them. It gives them a sense of serenity.”

When the sun comes up tomorrow, all the clients will be given breakfast and everyone here will return home. Brunhilda will take the van back to her apartment in upper Manhattan where she will be greeted by her daughter before she leaves for work. Josephina says she doesn’t know exactly what happens during her mother’s nightly sojourns, but she is grateful.

“She was very weak when she started there. We had to carry her up and down [the stairs]. But now she walks up and down. She walks to Broadway,” Josephina says. “She would not react to any of the conversation. Now she does. She’s a totally new person. I would say she’s 200 percent better.”

Josephina says the program helped to improve her mother’s life and her own life as well. But Brunhilda was battling congestive heart failure, and she succumbed to the disease a few months after we reported this story.