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.

 

Alzheimer’s Patients and Pretend Play

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dollsVivian, 88, holds a baby doll at Sunrise Senior Living in Beverly Hills, California. Some memory care and nursing homes are using a technique called doll therapy to ease anxiety among their residents with dementia.

Sitting beside a neatly made crib, 88-year-old Vivian held up a baby doll dressed in puppy dog pajamas. “Hello gorgeous,” she said, laughing. “You’re so cute.”

Vivian, who has Alzheimer’s disease, lives on a secure memory floor of a home for seniors. Nearly every day, she visits the dolls in the home’s pretend nursery. Sometimes she changes their clothes or lays them down for a nap. One morning, she sang to them: You are my sunshine, my only sunshine. You make me happy when skies are gray.

No one knows whether she believes she is holding a doll or a real baby. What the staff at Sunrise Senior Living do know is that Vivian — who can get agitated and aggressive — is always calm when caring for the dolls.

Nursing homes and other senior facilities nationwide are using a controversial technique called doll therapy to ease anxiety among their residents with dementia. Senior care providers and experts say the dolls are an alternative to medication and help draw in elderly people who are no longer able to participate in many activities.

“Many people with Alzheimer’s are bored and may become depressed or agitated or unhappy because they aren’t engaged,” said Ruth Drew, director of family and information services at the Alzheimer’s Association.

Caregivers are not trying to make their residents believe the dolls are real infants, and they do not want to infantilize the seniors, Drew said. They are just “trying to meet them where they are and communicate with them in a way that makes sense to them.”

Other senior facilities that use the dolls include On Lok Lifeways in San Francisco and the Los Angeles Jewish Home in the LA suburb of Reseda. Some, including Texas-based Belmont Village Senior Living, eschew them, arguing that it can be demeaning for seniors to play with dolls.

“They are adults and we want to treat them like adults,” said Stephanie Zeverino, who works in community relations at Belmont Village Senior Living Westwood. “These are very well-educated residents.”

The facility prefers other types of therapy, including art and music, she said. And staff members there work with residents to play brain games that promote critical thinking.

“We want to provide a sense of dignity,” Zeverino said.

Studies on doll therapy are limited, but some research has shown it can reduce the need for medications, diminish anxiety and improve communication, according to Gary Mitchell, a nurse specialist at Four Seasons Health Care in the United Kingdom who has authored a new book about doll therapy.

However, Mitchell acknowledged it is possible that doll therapy, because it can infantilize adults, “perpetuates a lot of stigma with dementia care that we are trying to get away from.”

Some families worry about their relatives being laughed at when they engage in doll therapy, Mitchell noted. He said he understands those concerns, and even shared them when he worked at a senior residential center. But when one resident requested that he allow her to continue caring for a doll, he soon saw the positive impact of the therapy.

Mitchell said it can be very beneficial for some people — especially those who may get easily distressed or pace obsessively. “Having the doll … offers them an anchor or a sense of attachment in a time of uncertainty,” he said. “A lot of people associate the doll with their younger days and having to care for people.”

At Sunrise Beverly Hills, the nursery is set up like a baby’s room. A stuffed bear rests inside the wooden crib. On a shelf above are framed photos of Vivian and a few other women who regularly interact with the dolls. A few bottles, a swaddling blanket, a Dr. Seuss book and diapers sit on a nearby changing table.

The nursery is just one of several areas in the Sunrise centers designed to engage residents, said Rita Altman, senior vice president of memory care for Sunrise, which has facilities in the United States, Canada and the United Kingdom. There are also art centers, offices, gardens and kitchens where residents may find familiar objects from their past.

Altman said the nurseries tend to attract residents who have an instinct to care for babies. Some people, she said, may not be able to talk anymore but still find a sense of security with the dolls. “You can read it in their body language when they pick up the doll,” she said.

Sunrise caregivers also use the dolls to spark conversations by asking questions: How many children do you have? Was your first baby a boy or a girl? What are the best things about being a mom?

The executive director of the Beverly Hills facility, Jason Malone, said he was skeptical about the use of dolls when he first heard about them.

“I almost felt like we were being deceitful,” he said. “It didn’t feel like it was real.”

But he quickly changed his mind when he realized that staff could use the dolls respectfully.

“We don’t want to confuse treating our seniors as children,” Malone said. “That’s not what this activity is truly about.”

Vivian began caring for the dolls soon after moving into the facility. When asked what she likes about the dolls, she said, “I love babies. I have some very nice ones back where I live now.”

Vivian’s daughter, Carol, said her mother raised three children and volunteered extensively in Colorado and Mexico before being diagnosed with Alzheimer’s about five years ago. Carol said she doesn’t see any downside to her mother caring for the dolls. It is a “creative way of dealing with her where she is now,” she said.

“I always describe my mother as being … very similar [to] many of my young grandchildren in her cognitive skills,” Carol added.

For some residents, including 87-year-old Marilou, holding the dolls is one of the only times she interacts with the staff. Marilou is confined to a wheelchair and rarely speaks. She sleeps much of the day.

There is not much [Marilou] can participate in,” said Vladimir Kaplun, former coordinator of the secure memory floor. “When she spends some time with the dolls, she wakes up and she brightens up.”

On a recent day, caregiver Jessica Butler sat next to Marilou, who held a doll against her chest and patted her on the back. She kissed the doll twice.

“The baby is beautiful like you,” Butler said.

“It’s a boy,” Marilou said. “Five months.”

“Is the baby five months?” Butler asked. “You’re doing a good job holding the baby.”

Caring for the dolls is second nature to Marilou, who made a career of being a mom to five children and was involved with the PTA, Girl Scouts and other activities, according to her daughter, Ellen.

Ellen said it’s been difficult to watch the decline of her mother, who hasn’t called her by name in over a year. Watching her with the dolls helps, she said.

“To see the light in her eyes when she has a baby doll in her arms, I don’t care if it’s real or if it’s pretending,” she said. “If that gives her comfort, I am A-OK with it.”

Advocate for Alzheimer’s Research

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Dr. Maria CarrilloAs the baby boomers age, the increasing number of patients with Alzheimer’s disease will take a serious toll on caregivers and families, and the costs associated with that care are expected to weigh heavily on the nation’s health care system.

A new study projects that the disease will be responsible for 25 percent of all Medicare spending by 2040.

Alzheimer’s is the most common form of dementia, and the number of cases is expected to balloon as people live longer:  Today 5.1 million people 65 and older have it. By 2025, the number will rise to 7.1 million, a nearly 40 percent increase, the Alzheimer’s Association estimates. The projections have sounded an alarm amid a tightening federal budget and concerns that there won’t be enough nursing facilities to take care of patients. Researchers and health policy experts met in Washington at a major conference in July 2015 to discuss the impact of and efforts to combat the disease.

Dr. Maria Carrillo (pictured), chief scientific officer at the Alzheimer’s Association, which paid for the research on Medicare projections that was released at the conference, talked in an interview about what the growth of Alzheimer’s will mean for the nation. The interview has been edited for length and clarity.

Why is there such an increase in Alzheimer’s disease?

We know that it is an older disease; it affects people mainly over 65. And it has been less than 100 years that we’ve lived to 65 plus. The average life expectancy now is 83 plus, and that’s why the baby boomer number is so critical. They’ll be living to 90, and that puts them at more risk for Alzheimer’s.

The other piece is that we’re more educated than we were 40 years ago, more people have high school diplomas and people are living older in professional settings.  They are working until 70 plus with the full expectation that they will continue to have a sharp brain.

Compare this to someone who stays at home. My mother-in-law, who has Alzheimer’s, stayed at home to raise her family. Her early symptoms weren’t as apparent because she wasn’t doing anything that required her to make mistakes that were glaring. In a professional setting, if you can’t multitask, it’s more apparent.

Much research is going on right now to prevent or slow down Alzheimer’s. Where does the research stand? What would you hope to see in screening for Alzheimer’s?

The federal government is making investments in research today — $350 million has been included in an appropriations bill for the Congress this fall, and if it’s approved, it will improve the National Institutes of Health (NIH) research dollars for Alzheimer’s by 50 percent. We’d also like to see things like saliva and blood screening tests that could be done in our primary care physician offices. It’s the first place where a loved one would go [if they started having symptoms]. If they could have something quick and easy, like a finger prick that says things aren’t right, we could pass the patient on to do more extensive testing.

You’ve mentioned, though, that there is no cure for Alzheimer’s. Why would someone want to be screened with that kind of outlook?

The reality is that what we have to do today is develop screening and detection simultaneously with treatments and cures. We have medications that are approved for Alzheimer’s and dementia, but the effects don’t last as long as we’d like. We’re trying to develop screening tools in conjunction with therapeutics that can slow its progression or provide more symptomatic relief than are available today.

How do you think the health system is going to adapt to a larger population with Alzheimer’s?

We’re going to need more skilled nursing and home health aides, because we won’t have enough institutions to support people. And not everyone wants to put a loved one in an institution. Even today, many home health workers aren’t specifically trained for dementia.

Unless we change the trajectory of what’s happening today or delay or stop the disease, Medicare and our society will have to think about creating more support systems as these patients age. We’re talking about assisted living and transition living, and more training of professional caregivers. There are 13 million caregivers right now, and we’re going to have to quadruple that. And two-thirds of these caregivers are women that have to slow down their careers or stop work altogether [to provide help to family members].

Respite care [which is non-medical care for a patient to allow the caregiver rest and time away from the responsibilities of looking after the person with dementia] is not covered by Medicare. It is paid for by Medicaid. But that’s only available when families [have spent down nearly all their assets] and don’t have resources to pay.

What does current research show that might help slow Alzheimer’s?

There won’t be a silver bullet, but a combination of therapeutics. What research is showing will be a mix of pharmacological, anti-inflammatory and psychological drugs, layered on with exercise.

We used to think it was just Diabetes Type 1 that led to Alzheimer’s but we’re seeing that it’s also Diabetes Type 2. The longer you live with diabetes, the greater risk you have. There’s a an 80 percent increase [in the likelihood of getting] dementia, so we need to figure out what it is about Type 1 and 2 that makes them more vulnerable to cognitive decline.

Other risk factors include a sedentary lifestyle, watching a lot of TV, which tells us what we do early in life does impact us late in life and increases our risk. So there must be public messaging. We owe it to the public to let them know.

What is the experience of caring for someone with Alzheimer’s like?

My father-in-law has vascular dementia, and my mother-in-law has Alzheimer’s – both need 24-hour care. My father-in-law has had a slow decline over five years – he’ll be stable for a year and then his health will drop, usually spurred by a physical event like a stroke. He is mainly disoriented, but remembers who we are and how to do daily tasks.

My mother-in-law has had a continuous and quick decline in a few years:  she doesn’t recognize family, she’s forgotten how to get into a car – standing, turning and sitting down, so she crawls.

You can’t leave a loved one like this with a caregiver all the time, so my husband, sibling and I take turns being there, and we pay for the care out-of-pocket, which not everyone can do. My mother-in-law has forgotten how to walk, and she needs to be carried everywhere. She doesn’t recognize us or her grandchildren, and she has to be cared for like an infant, it’s a low quality of life. At first our family tried to remind her of things, and it just caused anxiety in her and the family. You just kind of have to go with the flow, and stay even with emotions. I think it’s hard for me to see my children not having a grandmother that can care for them, and they’re instead caring for her. It makes me more committed to this cause.

I didn’t come into this work having this experience with my family. But now when I see this, it reinforces my passion to find an answer. It turns you into a champion for those that don’t have a voice.

Is Maturing Unaffordable?

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Could you pay more than $200 a day for nursing home care? Around two-thirds of Americans over age 65 will need long-term care, either through at-home health care services, assisted living or a nursing facility.

Yet more than 90 percent of those surveyed in the Genworth Financial “2014 Annual Cost of Care” report haven’t talked about critical long-term care issues with their spouse, partner or adult children.

Genworth Financial asked survey participants how long-term care issues impact relationships, jobs, stress and anxiety for those in the circle of care — care recipient, primary caregiver, secondary caregiver and families involved.

Having a plan before there is a need is crucial.

Discussions about long term care issues often lead to patients experiencing less depression, less pain and less anxiety. Care recipients should talk to their loved ones about what their options are for care, how it will be financed and what family members might be involved in care giving. Genworth offers help starting the conversation.

Average costs:

The survey reveals the average cost of various services nationwide:

  • Homemaker services (hands-off non-medical care like cooking and running errands): $18/hr.
  • Home health aides (hands-on non-medical care like bathing and dressing): $19/hr.
  • Adult daycare (social, non-medical, community-based setting for some part of the day): $65/daily
  • Assisted living facility (single occupancy, 1 bedroom, hands-on medical care): $3,450/monthly
  • Nursing facility (semi-private room, 24-hr care): $207/daily
  • Nursing facility (private room, 24-hour care) $230/daily

Nursing facility care has increased more than $16,000 a year since Genworth’s 2008 survey. The cost of a private room in a nursing home has risen 4.45 percent annually, nationwide, since 2008, with this year’s median cost at $83,950 per year.

Assisted living facility costs vary dramatically by state. In Arizona, the average annual cost is $37,800, in Texas, $40,035 and in New York, 47,400.

However, home care rates have remained relatively flat over the past five years. One reason may be because homemaker and home health aides are considered unskilled labor and the organizations that provide these services do not have the expense of maintaining a stand-alone health care facility.

Find out the costs of care where you live.

How will you pay for long-term care?

Medicare is an option for those over age 65 or disabled. Home health services may be covered under certain medically necessary conditions. For care in a nursing facility, however, only 100 days are covered per benefit period after a three-day hospital stay (observation vs. admitted), 20 days are covered at 100 percent and days 21 to 100 require a co-pay.

Medicaid generally covers those with low incomes and limited resources and may cover some home services as well as facility care, but Medicaid limits the amount of assets you may own and the monthly income you receive before you are eligible for coverage. Eligibility varies by state and there are restrictions for transferring assets out of your name to receive benefits.

Self-insurance means you or a family member pay out-of-pocket for care services.

Long-term care insurance will pay for a wide variety of home and facility care up to the policy limitations. Many states participate in the Long Term Care Insurance Partnership Program, which allows patients to access Medicaid if they reach their LTC policy limits, while still retaining more assets than normally allowed under Medicaid. Generally, those who own a long-term care insurance policy that meet the partnership requirements may participate in their state’s partnership program.

Fear of Alzheimer’s

The Alzheimer’s Association reports that the cost of care related to Alzheimer’s, including health care, long-term care and hospice, will soar to a projected $1.2 trillion per year by 2050, depleting the financial reserves of many families, along with the nation’s Medicare funds.

In a study conducted by Age Wave on behalf of Genworth, 61 percent of respondents ranked having Alzheimer’s disease as their single greatest fear later in life.

The Alzheimer’s Association estimates that approximately 5.2 million Americans of all ages have Alzheimer’s disease. This includes an estimated 5 million people age 65 and older and approximately 200,000 people under age 65 who have younger-onset Alzheimer’s.

One in nine people age 65 and older and about one-third of people age 85 and older have Alzheimer’s disease. Yet 49 percent of survey participants had not considered the possibility of needing long-term care.

Other interesting statistics

Care recipients:

  • 34 percent are mothers receiving care from adult children.
  • 12 percent are fathers receiving care from adult children.
  • 9 percent are spouses receiving care from a spouse.

Who pays?

  • $14,000 paid by care recipient (excluding cost of facility).
  • $8,000 paid by family members (excluding cost of facility).

Eighty-eight of survey participants said household income was reduced 34 percent due to a long-term care event.

How they paid for care:

  • Dipped into savings/retirement funds.
  • Borrowed, took a reverse mortgage or sold home.
  • Reduced savings, vacation and family expenses.

Research on Prevention: Alzheimer’s Disease

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Alzheimer’s is a progressive disease that attacks the brain. The connections between brain cells (and the brain cells themselves) break down and die. This process destroys memory and other important mental functions, such as reasoning and judgment. Eventually, Alzheimer’s disease affects a person’s bodily skills, and robs them of their independence. It’s the sixth leading cause of death in the U.S., according to the Alzheimer’s Association.

There’s no cure for Alzheimer’s. And scientists are still working to understand its cause, or causes. But some research is beginning to point to what we can do to either prevent or lessen the risk of Alzheimer’s. In fact, scientists at the University of California, San Francisco said that over 50% of all Alzheimer’s cases might be prevented through certain lifestyle changes.

Let’s take a look at some of their recommendations.

1. Keep your blood sugar in control.

Specialists have known for some time about the link between diabetes and Alzheimer’s. (See a 2011 report from the Alzheimer’s Association for one example.) But it appears that even just having higher-than-recommended blood sugar can put you at risk.

A study at Georgetown University from 2013 found that a shocking number of patients with early-onset Alzheimer’s also had elevated blood sugar levels. And though they were under a doctor’s care, many of those test subjects didn’t know that they had pre-diabetes. So get informed on any family history of diabetes, and talk with your doctor about getting your blood sugar tested.

2. Check your cholesterol and blood pressure.

Something else coming to light as scientists study Alzheimer’s is this guiding principle: If it’s good for your heart, it’s good for your brain, too. In a study of people with Down Syndrome, reported in a 2013 issue of PLOS ONE, researchers found that high levels of cholesterol—particularly LDL (the “bad” cholesterol)—can cause disruptions to a particular chromosome that can lead to Alzheimer’s. And another 2013 study reported in the Journal of the American Medical Association Neurology found that high blood pressure correlated strongly with the risk of developing Alzheimer’s as well.

Knowledge is power. Work with your doctor to make sure you get your blood pressure and cholesterol levels checked regularly. If they’re too high, you can develop a plan together to lower them.

3. Review your diet.

Alzheimer’s research focusing on what we eat has the following recommendations:

4. Keep your body active.

It appears that exercise can help protect the part of the brain that governs memory and spatial navigation—one of the first regions attacked by Alzheimer’s. A 2012 study published in the Archives of Neurology suggests that a daily walk or jog could lower the risk of Alzheimer’s—or lessen its impact once it has begun. And another study, conducted in the Netherlands in 2000, examined men who were genetically prone to Alzheimer’s. The inactive men in the group were four times more likely to develop the disease than those who worked out regularly.

Think it may too late to get active? Think again. Researchers from Rush University Medical Center reported on exercise and Alzheimer’s in the April 2012 issue of Neurology. It appears that even if you start exercising after turning 80, you could still lower your risk of getting Alzheimer’s. So talk to your doctor about getting started on an exercise program that’s right for you

5. Keep your mind busy.

In 2003, researchers at Albert Einstein College of Medicine found that mentally active seniors could reduce their risk of developing dementia by up to 75%, compared to people who don’t regularly exercise their brains. Activities included playing a musical instrument, chess or bridge. This conclusion has been backed up by other studies, including one published in the Archives of Neurology in 2012. It appears that activities such as playing games, reading and writing keep your brain’s connections working, which helps ward off dementia. The advice seems clear: if you don’t want to lose it, use it.

A note in closing: Please keep in mind that these findings are primarily from early-stage research. That means that they haven’t been through enough clinical trials to be accepted as clear health guidelines yet. Talk to your doctor before making any lifestyle changes, and to better understand your own risk of Alzheimer’s.