“Changing The Way We Look At Dementia” (KHN)

Judith Graham writes a “Navigating Aging” column for Kaiser Health News (khn.org). Many of her columns are worth reading, like a recent one on changing the way we look at dementia. The article is about an effort by Dementia Friends to change the way people talk about dementia as that “can make a big difference in people’s lives.” Another person says: “It’s about increasing awareness and empathy so that if you encounter someone in the community who needs some help, you have some basic skills.”

Here’s one story from the article:

“Bob Savage, an 86-year-old diagnosed two years ago with Alzheimer’s disease, became a Dementia Friend last year and now speaks to groups in Connecticut that are promoting the program. Some of what he tells them: ‘As soon as people learn you have Alzheimer’s, you’re stigmatized. People treat you different, like you don’t understand, and that’s very upsetting.’ Even if memory is lost, intuition and emotional understanding remain intact, Savage explained. What he and other people with dementia want most is ’emotional connection — that feeling of love that we had, that we may have lost’ when a diagnosis was delivered and a sense of being a burden to other people descended.”

You can get more info about the US effort called Dementia Friends USA from their website, dementiafriendsusa.org.

The full article is copied below.




Navigating Aging
Changing The Way We Look At Dementia
By Judith Graham
Kaiser Health News
February 8, 2018

In November, six people with Alzheimer’s disease and related types of cognitive impairment stood before an audience of 100 in North Haven, Conn.

One by one, they talked about what it was like to live with dementia in deeply personal terms.

Before the presentation, audience members were asked to write down five words they associated with dementia. Afterward, they were asked to do the same, this time reflecting on what they’d learned.

“Without exception, the words people used had changed — from ‘hopeless’ to ‘hope,’ from ‘depressed’ to ‘courageous,’ from ‘empty’ to ‘fulfilled,’” said Erica DeFrancesco, a clinical assistant professor of occupational therapy at Quinnipiac University who helped organize the event.

The session, followed by an hour-long discussion about dementia, is part of a new grass-roots movement in the U.S. aimed at educating people about Alzheimer’s disease and other forms of dementia, dispelling the painful stigma associated with these conditions and enhancing public understanding.

A centerpiece of that effort, known as “Dementia Friends,” began just over a year ago under the auspices of Dementia Friendly America, an effort spearheaded by 35 organizations across the country.

Currently, more than 13,200 people are registered as Dementia Friends in the U.S., and organizations in 14 states (Arizona, California, Connecticut, Hawaii, Illinois, Indiana, Maryland, Massachusetts, Michigan, Minnesota, Ohio, North Carolina, Virginia, Wyoming) are hosting events to sign up more.

Globally, almost 14 million people in 33 countries are involved in the movement, which originated in Japan.

To become a Dementia Friend, most people attend an hour-long presentation focused on several themes:

* Disease vs. typical aging. Alzheimer’s disease and other types of dementia are illnesses of the brain, not a natural consequence of aging.

* Scope of symptoms. Dementia triggers a wide array of symptoms, not just memory loss.

* Quality of life. People with dementia can live well, often for years.

* Maintaining identity and respect. People with dementia retain a sense of self and aren’t defined exclusively by this condition. (Testimonials by people with dementia are sometimes, but not always, included.)

“If we can change the way people look at dementia and talk about it, we can make a big difference in people’s lives,” said Philippa Tree, who spearheads a well-established Dementia Friends program in England and Wales, with about 2.3 million members, that has licensed its model to the U.S.

“It’s about increasing awareness and empathy so that if you encounter someone in the community who needs some help, you have some basic skills,” said Meredith Hanley, project lead for Dementia Friends USA.

William Anderson, chief of police for St. Cloud, Minn., went to a session of this kind late last year, with about 40 members of his department. One exercise — writing down all the steps involved in making a peanut butter and jelly sandwich — made an especially strong impression.

“I’d never thought about everything that goes into something that simple: taking the peanut butter and jelly out of the cabinet, unscrewing the tops, getting a knife, spreading the sides of the bread, putting the pieces on top of each other, cutting it down the middle,” Anderson said, adding that this was only a partial list.

“The point they were making was that folks with dementia might remember some of these steps but not others. At some point, they’ll get distracted or forget what they were doing and go on to something else. To me, that was eye-opening; it explained a lot.”

Now, Anderson thinks about “how we can make life more manageable for these folks, in simple ways.” An example: The St. Cloud Police Department’s building has a large vestibule, with two big glass doors. “If you have dementia, you’re going to walk into that vestibule and probably turn around in circles because the doors don’t have an identifier saying ‘police,’” he said, adding that introducing new signage is under consideration.

Committing to a concrete action — visiting or phoning a family member with Alzheimer’s regularly, watching out for a neighbor, volunteering with a community organization or trying to make public venues easier to navigate, for instance — is required to become a Dementia Friend, though sponsors don’t check if people follow through.

“This is a social action movement,” said Emily Farah-Miller, executive lead for ACT on Alzheimer’s, a statewide effort in Minnesota to create dementia-friendly communities and disseminate best practices regarding dementia in health care settings.

More than 10,000 U.S. Dementia Friends come from Minnesota, which began recruiting residents for the program two years ago, before it became a national initiative.

This year, Minnesota ACT on Alzheimer’s leaders are working with African-American, Hispanic, American Indian, West African and Hmong communities in their state to make culturally sensitive adaptations to their programs. And they’re piloting a modified version of Dementia Friends in several elementary schools “to create a dementia-friendly generation of youth,” Farah-Miller said.

Individuals can also earn a “Dementia Friends” designation by watching an introductory video on Dementia Friends’ USA website, as well as a second video about dealing with people with dementia in various settings such as restaurants, stores, banks, libraries, pharmacies, faith communities and public transportation.

If you encounter someone who seems confused and disoriented on a bus, train, taxi or subway, try to understand what that person might need, one of these videos advises. Speak slowly, using short, simple sentences and give the person adequate time to respond. Remain calm and reassuring and avoid arguing or embarrassing the person who may have forgotten where they’re going.

Bob Savage, an 86-year-old diagnosed two years ago with Alzheimer’s disease, became a Dementia Friend last year and now speaks to groups in Connecticut that are promoting the program.

Some of what he tells them: “As soon as people learn you have Alzheimer’s, you’re stigmatized. People treat you different, like you don’t understand, and that’s very upsetting.”

Even if memory is lost, intuition and emotional understanding remain intact, Savage explained.

What he and other people with dementia want most is “emotional connection — that feeling of love that we had, that we may have lost” when a diagnosis was delivered and a sense of being a burden to other people descended.

In 2016, Savage moved to a campus in Southington, Conn., where 133 people with dementia reside in assisted living or a skilled nursing facility. Stephani Shivers, chief operating officer of LiveWell (formerly the Alzheimer’s Resource Center), which owns the campus, is leading Connecticut’s Dementia Friends initiative.

“What I’ve seen is that barriers seem to dissolve for people who attend” information sessions, she said. “Whether it’s ‘I’m not sure what to say to someone with dementia’ or ‘I’m nervous about being with someone with dementia,’ the ‘I don’t know what to do’ falls away.

“It becomes me relating to you, a person with dementia, as another human being — a human being living with a cognitive disability, just like people living with physical disabilities.”

KHN’s coverage of these topics is supported by John A. Hartford Foundation and Gordon and Betty Moore Foundation

“‘Therapeutic Lying’ and Other Ways To Handle Patients With Dementia”

A family in the local support group has been struggling with their loved one’s delusions.  I suggested “white lies,” which made the family uncomfortable.  I found this 2004 article from The Wall Street Journal (wsj.com) offering three approaches for families to communicate with family members with dementia — therapeutic lying, Aikido, and validation therapy.  These approaches all “require the caregiver to give up trying to force the dementia patient to accept reality, and surrender instead to the fact that the patient is living in another mental and emotional world.”

Here’s a quick example of the three approaches.  “For instance, if Mom insists that she and her long-dead friend Mavis are going out dancing, here are some possible responses:”

* Therapeutic lying: “Mavis won’t be here until later, Mom. Let’s go to the mall for a while and take a walk.”

* Aikido: “I can see you miss having outings with your friends. I share your frustration. The senior center is offering waltz lessons. Would you like to sign up?”

* Validation Therapy: “You wish you could go out dancing again. I remember how beautifully you used to dance. What was it like to go out dancing with your friends? Isn’t that how you met Dad?”

Here’s a link to the full article:


‘Therapeutic Lying’ and Other Ways To Handle Patients With Dementia
By Sue Shellenbarger ([email protected]), Staff Reporter
The Wall Street Journal
Updated Nov. 11, 2004 12:01 a.m. ET

“Unfortunate Irony Turns Renowned Scientist Into Caregiver For His Wife”

This is a nice article about a scientist who spent years studying Parkinson’s and then became a caregiver for his wife who was diagnosed in 2011 with Lewy body dementia (called “cortical Lewy body disease” in the article).  The wife, a former preacher, had been diagnosed with Parkinson’s in 2004.

This article was published on Flatland (flatlandkc.org), the digital magazine of KCPT Public Television in Kansas City, MO.  My browser did NOT like the Flatland website, which is a shame because there are some photos accompanying the article.  The article was shortened and re-published on NextAvenue (nextavenue.org).  Below, find the text of the original article and links to both websites.


www.flatlandkc.org/news-issues/cover-story/bill-priscilla-neaves/ –> my browser did NOT like this website

www.nextavenue.org/sad-irony-scientist-caregiver/ –> shorter version of article is here

Faith And Love
Unfortunate Irony Turns Renowned Scientist Into Caregiver For His Minister Wife
By Barbara Shelly
January 1st, 2018 at 6:00 AM

Churchgoers at a tidy, white-steepled United Methodist Church in Carrollton, Missouri, heard a frank admission from their guest pastor one spring morning in 2007.

“When asked to preach this Sunday, I almost said no,” Priscilla Wood Neaves told the congregation. “Why? Not because I lacked training and experience, and I have always enjoyed preaching.”

She had, in fact, fought for the right to preach. As a girl growing up in the 1950s in the Texas panhandle, Neaves was told that women could not be ordained ministers in the United Methodist Church. The information was erroneous, but not until she left Texas for college, marriage and motherhood did she encounter a female pastor who could disprove it.

Eventually Neaves graduated from the Perkins School of Theology at Southern Methodist University, became an ordained Methodist minister and hospital chaplain, and gathered a wealth of life experiences to frame her sermons.

And then life dealt a blow that temporarily stilled her voice.

“I was diagnosed with Parkinson’s disease three years ago,” Neaves told the congregation in Carrollton, “and I have not formally ‘proclaimed the Word’ since then. I guess it was because of feeling a mixture of fear and anger directed toward God.”

Listening in the congregation to the candid and unusual sermon was the preacher’s husband, Bill Neaves. Never entirely comfortable with church and organized religion, he kept a low profile. Few in the country church knew that, while Priscilla was wrestling with her medical diagnosis, Bill was engaged in a professional and political struggle involving the search for cures for diseases like Parkinson’s.

Childhood sweethearts from Spur, Texas, Bill and Priscilla Neaves both packed up briefcases stuffed with credentials when they moved to Kansas City in 2000.

He had been dean and executive vice president for academic affairs at the University of Texas Southwestern Medical Center in Dallas, a lauded institution where Nobel Prize winners worked with other faculty members to advance science and medicine. She was a chaplain at Children’s Medical Center Dallas — a front-line responder to small patients and their families in moments of fear, relief and overwhelming grief.

James Stowers, founder and CEO of American Century Investments, had consulted with Bill Neaves about a research facility he was creating in Kansas City. He envisioned a place in his hometown where premier scientists would have resources and time to study the causes of diseases and embark on a search for cures. Stowers asked Neaves to be the first president and CEO of the Stowers Institute for Medical Research.

“I was enthusiastic about it,” Neaves says. “Few people want to support basic science.”

But he needed to persuade Priscilla. She had balked at several other moves when opportunities had arisen. After a dinner with Stowers; his wife, Virginia; and other family members, she agreed. Neither Bill nor Priscilla Neaves had any way of knowing that during the next few years his new job would come to involve politics as much as science, and her physical and spiritual health would be put to the test.

Priscilla quickly dived into life in Kansas City by joining the board of directors of the medical ethics research and advocacy group now known as The Center for Practical Bioethics. She also joined the Institutional Review Board for Children’s Mercy Hospital.

The first signs of trouble appeared in the fall of 2003. Priscilla didn’t feel well; something was off, she said. She wasn’t able to walk with her normal stride. When the odd symptoms persisted for a few weeks, Bill tapped his medical contacts.

In January 2004, a physician at the University of Kansas Hospital diagnosed Parkinson’s disease. Another physician at Washington University Medical Center in St. Louis concurred.

As Priscilla noted in her sermon a few years later, the news came as a blow. Parkinson’s disease is a neurodegenerative disorder that hinders the brain’s ability to produce dopamine, the transmitter that enables people to regulate motor functions.

Still, the disorder progresses slowly in most people, and Priscilla was accustomed to a busy and productive life. She became a full-time volunteer chaplain at Carroll County Memorial Hospital in 2006 after the couple purchased a farm about 60 miles northeast of Kansas City. In that capacity, she provided spiritual resources and facilitated support groups for cancer and Parkinson’s patients.

Though his wife’s health was a concern, Bill Neaves was ebullient about progress at the Stowers Institute in its early years. First-rate scientists had indeed been willing to come to Kansas City, and they were engaged in rigorous and productive research.

One cloud on the horizon was legislation that kept resurfacing in the Missouri General Assembly. Pushed by Matt Bartle, a lawyer and at the time a state senator from Lee’s Summit, its stated purpose was to ban human cloning. But Bartle’s definition of cloning went far beyond a scenario in which a squawking baby might emerge from a laboratory. His bill aimed to ban even the copying of human embryos as small as a few dozen cells.

Those miniscule lab dish embryos are home to embryonic stem cells that can be formed with a patient’s DNA. Scientists believe the newly created cells can be used to repair tissue, organs and nerves damaged by all manner of injuries and diseases. In the early 2000s, they eyed the laboratory procedure with great hope.

To Bartle and others, it represented a moral threat. That’s because, once embryonic stem cells are harvested, the tiny embryo that sheltered them is destroyed. What some people viewed as a somewhat mysterious lab dish procedure, religious conservatives saw as the willful termination of human life.

The issue made it to the November 2006 ballot in the form of a constitutional amendment that would protect all scientific research in Missouri that was legal under federal law.

Jim and Virginia Stowers spent $30 million to bankroll the campaign supporting the amendment. Opponents formed their own coalition and also raised millions of dollars. Missouri citizens were besieged by television ads alternately lauding the promise of stem cell research and issuing dire, if misleading, warnings about cloning.

Bill Neaves was in the thick of it all. He wrote essays and traveled the state, speaking to groups to explain what embryonic stem cell research meant for science and the Stowers Institute. He touted its potential to stop or slow the suffering from devastating diseases. He mentioned Parkinson’s disease. What he never said publicly was that the person closest to him had been diagnosed with that illness.

The constitutional amendment passed by a razor-thin margin — a difference of 50,800 votes out of 2.1 million cast.

Ultimately, science itself stepped in to bring an uneasy truce. A Japanese researcher found a way to make adult cells behave like embryonic cells, with the same capacity to repair and rebuild damaged body parts. The reprogramming method is less costly than the somatic cell nuclear transfer procedure, and it sidesteps the ethical issues. It is now the preferred avenue for many scientists, including those at the Stowers Institute.

With his wife at his side, Bill Neaves had done his part to stand up for science. But science could not immediately return the favor. It could not stop the frightening changes that were going on in Priscilla’s body.

“For more than a quarter-century, I have retreated each summer to the Beartooth Wilderness on the Boulder River in Montana,” Priscilla Neaves wrote in July 2008. “I relax, enjoy, meditate and relate to God’s magnificent mountains and forests. Perhaps my Native American heritage encourages me to celebrate nature — my paternal grandmother was half Choctaw.”

From the deck of the wilderness home she and Bill cherished, Priscilla wrote of her love of nature, as experienced in Montana, West Texas and New England — all places she had lived. Bill would later include the meditation in a compilation of his wife’s sermons and writings. Soon after that, Priscilla’s illness made further trips impossible. “Mercifully,” Bill wrote in the afterword of the book he compiled in his wife’s honor, “we rarely realize that we are doing a beloved thing for the last time.”

The previous couple of years had been difficult. The couple lost their son, William Jr., in May of 2007. Living in Houston, he had waged a long struggle with alcoholism and died of its complications. “Priscilla was amazingly stoic about it, but I know it must have been incredibly difficult for her,” Bill says now.

She continued her work as a voluntary chaplain and frequently preached sermons in the chapel of Carroll County Memorial Hospital.

“When questions about the meaning and purpose of life hit us like a tornado, God’s grace can be most tangible,” she told her small congregation in 2009. “Job’s way can also be ours. I know. I have been there.”

By this time the Stowers Institute was thriving. Jim and Virginia Stowers had given $2 billion worth of American Century stock to its endowment. Labs were filling up with impressively credentialed scientists. A spinoff biotechnology company, BioMed Valley Technologies Inc., had been formed to move treatments and therapies into clinical development.

In June 2010, Bill Neaves announced he would retire as president and CEO of the institute. He had already begun handing off the day-to-day operations to a protege, David M. Chao.

Neaves talked about wanting more time for research and various projects. He was especially excited about returning to research he’d begun 40 years ago, studying the asexual reproduction patterns of some species of lizards. He didn’t disclose publicly that his family was dealing with an all-consuming illness.

Priscilla’s symptoms were increasingly resembling more of a dementia-type illness than traditional Parkinson’s disease. At the end of 2011, specialists at the Mayo Clinic in Rochester, Minnesota, found that Priscilla was suffering from cortical lewy body disease — a brain disorder closely related to Parkinson’s but even more devastating. The destruction proceeds beyond motor control to destroy brain neurons associated with cognitive functioning and movement.

Bill Neaves recalls that his wife absorbed the terrible news calmly. “Priscilla was still pretty much intellectually intact then, and I was very impressed with what she said,” he recalls. “The neurologist said, ‘This is what we have, and it will probably be fatal within a year and a half.’ Priscilla said, ‘Well, glad to know what I’m facing, and I know firsthand that a lot worse things have happened to people than what is happening to me.’”

The couple had moved several months earlier into an apartment in Bishop Spencer Place, a retirement facility in midtown Kansas City that has provisions for nursing care. Linda Yeager, who was chaplain there at the time, remembers that Priscilla sought her out.

“She was very anxious for me to know that she was a minister herself, and she was very interested in helping other people,” Yeager said. “She wanted to share her books, and she wanted to do research and help people. She was greatly respected and loved.”

But Priscilla’s disease was progressing rapidly. By 2012, she was experiencing anxiety, confusion and paranoia. Daily tasks such as routine teeth brushing became a struggle.

On the advice of her family physician, Priscilla moved to a Leawood facility that treats patients with dementia. She became bedridden, mostly paralyzed from the chest down, with limited use of her hands. Once a passionate voice on nearly every topic, she now spoke only intermittently.

For nearly a year, Priscilla was officially in hospice care.

Bill, who describes himself as “a compulsive-type person,” began preparing for his wife’s death. He made cremation arrangements. He visited a printer and prepared a death announcement for Priscilla. Then he focused on putting together her book, “Sermons and Meditations,” which offers an eloquent, widely sourced study of theology from the perspective of a feminist and an environmentalist.

“That was a very therapeutic thing for me,” Bill says of the book project.

And then the mysterious, maddening, wonderful creation that is the human body served up another surprise. At the end of 2013, Priscilla’s disease stopped progressing. It had run its course, a specialist told Bill. With good care, she could live for a long time. But the damage already done — the paralysis, the speech loss, the loss of memory and cognition — was likely irreversible.

These days, Bill awakens most mornings at 5 a.m. in the apartment he and Priscilla share at Bishop Spencer Place. He sets about slicing up fruits for Priscilla to eat at lunch and supper. About an hour later he escorts his wife to the skilled nursing portion of the complex and sees that she is settled at her usual breakfast table. He makes sure she drinks water.

Bill, 74, and a year older than his wife, then drives to the Stowers Institute, arriving around 6:30 a.m. A tall, rail-thin figure in blue jeans, he glides around its hallways at a clip that feels like a trot if you’re trying to keep up with him. He knows everyone by name, from top scientists to the servers in the cafe. He teaches a research course and writes papers, mostly for scientific publications. He also serves on the boards of several institutions.

Sometimes he visits the institute’s reptile facility, where he and a Stowers scientist, Peter Baumann, continue the study of unisexual lizard reproduction.

A couple of years ago, the scientific journal “Breviora” honored Neaves by lending his name to a new lizard species, aspidoscelis neavesi — Neaves’ whiptail lizard. And very recently, the “Bulletin of the Museum of Comparative Zoology,” out of Harvard University, named a different species aspidoscelis priscillae — Priscilla’s whiptail lizard. This is only appropriate. When they were much younger, Priscilla spent months collecting lizards with Bill in the deserts of New Mexico.

Bill Neaves returns to Bishop Spencer Place around 10:30 a.m. and stops in the cafe to buy Priscilla a cup of coffee. He helps her eat lunch and, again, makes sure she drinks water. Then it’s back to the Stowers Institute until about 3:30 p.m. Late afternoons and evenings are consumed by a routine of coffee, dinner, companionship and bedtime preparations.

It’s an “incredibly ritualized schedule,” Bill acknowledges. “But I read somewhere a few years ago that one of the practical bits of advice for people who are into Zen is to turn what might otherwise be routine activity into real rituals. That seems to work for Priscilla and me.”

If life had served up a different set of circumstances, Bill Neaves might be traveling the world right now, speaking at scientific conferences and soaking in the tributes due the founding president of a world-class research facility.

“I’m really glad I don’t have to do that anymore,” he tells me.

“Not that I wouldn’t rather be sitting on our deck looking over the trees at the Beartooth Wilderness in Montana with Priscilla, enjoying a glass of chardonnay, but this isn’t … isn’t bad,” Neaves says. “It’s better than I thought it would be. There’s still enough of Priscilla there to make it feel very rewarding to have the time with her.”

And what about Priscilla, the woman who broke barriers in her church, raised two children, comforted grieving families and lived with Bill in places as far-flung as Boston and Kenya?

For all of her life, she had been a reader, a writer and a thinker. As a hospital chaplain, she kept copious notes about her encounters with patients and their families.

“I was impressed by this woman’s strength,” Priscilla wrote, after an encounter with a single mother. “She did not act like a victim, although she has been victimized and suffered many hard times. She did the best she could, and that was pretty amazing.”

Now the ravages of a terrible disease have left Priscilla unable to write down her thoughts, or verbalize them. But remarks in the sermons that her husband compiled seem prescient.

“Cherish the time you have with those you love,” she counseled a group in the Carroll County Hospital Chapel. “Don’t wait for tomorrow. Don’t let the deadlines and demands of daily life delay the dreams you share.”

And this: “As we all move closer to a grave, the fleeting time we are given with each other is so precious when measured against the time of eternity. How are we using that time?”

—Barbara Shelly is a veteran journalist and writer based in Kansas City

5 Things Family Caregivers Need to Know About Family Leave (NextAvenue)

This week is the 25th anniversary of the Family and Medical Leave Act (FMLA). This law allows employees up to 12 weeks of unpaid time off from work to care for family or their own health without losing their job. Of course, many families can’t manage so long without pay. Currently, there is talk of an expansion of the law to include paid leave.

Here is an article from NextAvenue (nextavenue.org) explaining more about what FMLA currently covers and where it may be headed.



“5 Things Family Caregivers Need to Know About Family Leave”
February 7, 2018
Diane Harris


This week marks the 25th anniversary of the Family and Medical Leave Act (FMLA), which allows employees to take up to 12 weeks of unpaid time off from work to care for a new child or sick relative or to manage their own serious medical condition without fear of losing their job. The biggest cause for celebration, however, isn’t for what the law has accomplished over the past quarter century, but rather what may come next.

“Momentum is clearly growing among policymakers and employers for an expansion of the law that will include paid leave,” says Lynn Friss Feinberg, a senior strategic policy adviser for the AARP Public Policy Institute. “It’s increasingly seen as a bipartisan issue.”
What Could Help America’s Family Caregivers

That would be especially good news for the nation’s 24 million family caregivers who hold down a job while looking after an ailing family member. Employees who take a leave after having a baby or to deal with their own health issues may be able to partially fund that time off with state- or employer- provided short-term disability insurance, but that option isn’t available when you’re caring for someone else.

Says Feinberg, “Most family caregivers can’t afford to take a leave.”

That is, if they’re even eligible for time off under the FMLA to begin with. Businesses with fewer than 50 employees are exempt and recent hires and part-time workers are excluded. The upshot: Only about 60 percent of the workforce qualifies.
5 Things Family Caregivers Should Know About Family Leave

If you need time off to care for your spouse or an older relative, here are five important things to know about what the law can and can’t do for you — and the changes that may lie ahead:

1. FMLA isn’t just for new parents. “People often assume the law only applies to moms and babies, but the most common use is to deal with your own health issue,” says Vicki Shabo, vice president for workplace policies and strategies at the National Partnership for Women & Families.

In fact, more than half of the employees who took a leave over a 12-month period used the time to manage their own illness, according to a Department of Labor survey. The second most common reason was to care for a new child (cited by 21 percent); 18 percent needed time off to help a parent, spouse or child with health problems.

Yet as the public discussion over paid leave heats up, parental leave and family leave are still often conflated. In his State of the Union address, for instance, President Donald Trump called on Congress and the country to “support working families by supporting paid family leave.” But the proposal he included in his budget last year was limited to paid time off for new parents.

Says Shabo: “It’s important to look beyond the language at the comprehensiveness of a proposal or policy to make sure it includes all of the FMLA reasons.” More about such proposals shortly.

2. You can’t use the federal law to care for your father-in-law or mother-in-law. You typically can’t get time off under the FMLA to help your brother, sister, grandmother, grandfather or adult child either. That’s because the law narrowly defines “family” as a spouse, parent or child under 18.

Exceptions are made for a relative or other person who helped raise you as a minor by providing substantial day-to-day or financial support, and for a grown child who is severely disabled.

All told, more than one-third of family caregivers provide help for an adult family member who falls outside of the FMLA’s parameters, according to a National Alliance for Caregiving and AARP report.

3. You may get more family-leave help from your state or city than from the federal government. States have been the pioneers in pushing family leave laws beyond the boundaries set by the FMLA.

About a quarter of states have protections for unpaid leave that go beyond the FMLA, providing coverage for people who work for small businesses, extending time off beyond 12 weeks or defining family more broadly to include grandparents, in-laws and other relatives. (A summary of the state rules is in this National Partnership report.)

Meanwhile, paid sick days are now available for family caregiving duties in nine states and 35 localities. These help with some common caregiving tasks that may not be covered under the family leave law, such as taking Dad to a doctor’s appointment or getting Aunt Emily settled in at a new care facility. (What’s available in your area? Look here.)

Plus, a handful of states now have paid family leave policies, including California, New Jersey, Rhode Island and New York. Bills passed last year by Washington and the District of Columbia are scheduled to take effect in 2019 and 2020.

The California law, as an example, replaces 60 to 70 percent of wages for up to six weeks; the New York law now offers up to eight weeks with 50 percent of pay and will expand to 12 weeks at 67 percent of pay when it’s fully implemented in 2021. (Details on the state programs are here.)

Look for more states to hop on the bandwagon. Shabo says Massachusetts is likely to pass a paid family leave law this year, and campaigns are heating up in Colorado, New Hampshire, Oregon and Vermont.

4. Employers are lagging on paid leave for family caregivers. More than 100 leading and brand-name companies — such as Deloitte, Facebook, Microsoft and Nike — have added or expanded paid leave policies in the past three years, but still only 13 percent of private-sector employees are covered, the Bureau of Labor Statistics reports.

Worse yet for anyone caring for parent or spouse with health problems: Most of the new corporate programs, despite being called “family leave,” only cover new parents; just 20 percent including provisions for family caregivers. Those that do often fall woefully short of need, with many capping replacement pay at two weeks or less — a mere three days in the case of Capital One and four days for FMC, according to a National Partnership report.

Still, AARP’s Feinberg is hopeful that demographics and personal experience will motivate more companies to cover family caregivers in the future.

“By 2024, nearly one in four people in the labor force will be age 55 and older, including midlife and older women who are more likely to take on a caregiving role,” she notes. “More people in C-suites are being personally affected by caregiving challenges too, and that will help drive awareness of the need for paid leave policies across the life span of working families.”

5. More federal help may be coming (emphasis on may). As part of the new tax law, starting in 2018, employers that provide paid family and medical leave to workers who earn less than $72,000 a year are now eligible for a tax credit of 12.5 to 25 percent of the cost of each hour of paid leave, depending on how much of the worker’s earnings the benefit replaces. Employers must compensate workers for at least 50 percent of their regular earnings.

Don’t cheer yet.

Critics point out that the leave can be as little as two weeks, employers are only required to cover one or more of the purposes outlined in the FMLA, the tax credit is scheduled to end in two years and it only covers caring for the family members in the original FMLA law (in other words, no credit for assisting an in-law, a grandparent, a brother, a sister or an adult child).

Also troubling: “Economists across the ideological spectrum agree that the provision is unlikely to incentivize new policies to be put in place but rather will just be a subsidy for employers with existing policies,” says Shabo. That echoes the conclusion of 14 experts in a joint report on paid family leave from the American Enterprise Institute and the Brookings Institution last year.

Caregiving experts are more enthusiastic, however, about the growing number of supporters for the Family and Medical Insurance Leave (FAMILY) Act, introduced five years ago by Sen. Kirsten Gillibrand (D.-N.Y.) and Rep. Rosa DeLauro (D.-Conn.) and now co-sponsored by an additional 28 senators and 146 representatives (but no Republicans).

The bill would allow workers at any size employer to get up to 66 percent of their pay for as many as 12 weeks of leave to manage serious family or medical issues for care of a child, parent, spouse or domestic partner. The program would be funded through small employer and employee contributions of 0.2 percent of wages each, up to a cap of $128,400 in wages in 2018 (about $1.50 a week for a typical worker), with self-employed people paying both parts, as they do now with contributions to Social Security.

Among Republicans, Sen. Marco Rubio (R.-Fla.) is working with Ivanka Trump on a proposal that would let workers who want to take parental leave tap into their Social Security benefits to fund it, then delay getting payouts at retirement age by the time off taken. For example, according to Politico, someone who’d begin receiving full Social Security benefits at 67 but wants to take six weeks of paid leave wouldn’t start claiming Social Security until six weeks after turning 67.

Critics point out this poses particular risk for women, who are more likely than men to take time out of the workforce for caregiving, more reliant on Social Security for income in retirement and more apt to struggle financially as they age.

No one is placing bets yet on which plan, if any, will actually pass.

Advocates like Shabo worry that the idea that something is better than nothing could lead to a program that leaves out large groups of family caregivers, sets length and wage replacement limits too low or doesn’t provide for an adequate and sustainable method of funding.

“This is a huge moment of opportunity,” she says. “But the stakes for getting a policy right, one that is reflective of the needs of the entire U.S. workforce and their families, have never been higher.”

“Healing from Bad Luck Fatigue” – Webinar Notes

Last week, Denise Brown of CareGiving.com hosted a webinar titled “Healing from Bad Luck Fatigue.”

The title is a little strange (I think). The premise is that caregivers sometimes feel as if they have bad luck as they are constantly coping with problems. Denise Brown provides some tips on dealing with the associated fatigue.

The webinar recording can be found here:


Brain Support Network volunteer Adrian Quintero listened to the webinar and shared notes.


Notes by Adrian Quintero, Brain Support Network volunteer

“Healing from Bad Luck Fatigue” Webinar
January 31, 2018



  • The advice of taking a break may feel counter-intuitive. We can believe that if we are not actively trying to find solutions to the problems, we are not taking the problems seriously enough. 
  • It is possible to overwork a problem, over work your brain. With too much stress, we can’t think clearly and find solutions we need. One suggestion is to tell yourself “I’m going to go to bed, when I wake up I”ll know just what to do.” This allows a way to both take a break, and also be working on the problem too, subconsciously.
  • It can be easy to obsess about the past, what has or hasn’t happened. The suggestion is to “face forward”, and that the solution is ahead of us. 
  • Taking a break could mean a day to not think about it, or even just for a moment. 
  • Important to remember taking a break is not giving up responsibility, but “giving solutions a chance to find you.”


  • Moving from resentment and bitterness into possibilities and opportunities
  • Being present in what is can help with figuring out what to do next
  • Rather than beating ourselves up over something we can’t change or control
  • To remember mistakes are okay, we are all human
  • Letting go of emotions that can drain our energy, such as past hurts
  • Letting go of the idea we alone must fix the situation we are facing


  • Releasing feelings such as irritation, anger, frustration. Remembering that bad luck has happened in our lives, and we have every right to be mad about it
  • Releasing in a physical way- walk, jumping up and down, any thing that feels good. Physical activity, even simple, can help let it out.
  • There is much research that says exercise can really help our mental health
  • Writing, venting to friend or support group, helps bad luck not take a hold so tightly
  • “Once you let it out, you can let in” Releasing what’s not wanted or needed allows space for answers, support, resources, new insight into our situation and problems we are facing
  • We want to let in the idea that others can help, even if this may be others we don’t yet know


  • We alone, as individuals, don’t have to fix everything 
  • Our faith (if that is part of our lives, support, ideas
  • Often times shame (maybe of how we are handling a tough situation), can keep support away from us
  • Remembering we deserve support from people who understand our situation and struggle


  • Curiosity is a great skill to have in life. It can be a way we stay well, though we often don’t think of curiosity this way
  • When we are open and curious in our lives, we remain out of judgement of ourselves, situation, and others
  • Suggestion to think and ask ourselves “how will this work out?” 
  • We could start the morning with question such as “who will help me today?” or “what will make me smile today?” 
  • When ask a question, our minds search for answers. Asking a question that can lead to an answer that will help. 
  • Think about questions want answers for. We can start the day with question


  • May sound goofy! It can be thought of as a practice in accepting abundance
  • When we are deep in bad luck, we are fighting scarcity, and feeling there is not enough. Pennies can be a simple way to think about abundance differently
  • Working with the idea of not to walk by and dismiss abundance, but take it and receive it


  • We might feel like “I am the only one with the worst luck in the world” This can feel very true, but doesn’t serve us well to see life this way
  • Can be helpful to understand it’s not just any one of us. We have bad luck right now, and we are not the only one. This idea can be isolating and make it harder to see an end to bad luck. Our shared experience with others, and reminders the bad luck is not personal, even though it can feel that way
  • Looking to nature for inspiration: There are 4 seasons, winter doesn’t stay for 12 months, we move through changes just like nature does. Bad luck might be the winter of your year, you will move into spring (that could be part of the curiosity questions “When is my spring coming? When will days be longer and heart be lighter?”)


  • Giving thanks to other things we may see (nature, etc.) even during times of bad luck. Perhaps feeling grateful for opportunities to learn from nature
  • Looking for opportunities in our day to give thanks. Maybe in ordinary parts of the day we normally overlook. (gas in car, food in fridge, etc)
  • Could create rituals around gratitude during an activity we love. She gives an example of swimming laps, touching the wall, thinking “thank you,” each time. Could be giving thanks in the morning for a fresh start, new chance
  • This can be a calming way to manage the chaos of bad luck


  • This might seem odd when you are barely able to help yourself, overwhelmed caring for another, and overtaken by things not going right. One of best ways we can help ourselves is to help another. How can we help without it feeling like a burden? Could be a simple thing- smiling at someone, opening a door, something small and simple, that doesn’t cost you anything
  • This can serves as a way to see oneself in a new light. Sometimes caregiving can feel like we aren’t making a difference, the declines are winning, and helping other in a tangible way where the difference can be seen can be inspiring.


  • During times of bad luck it can feel as if there is no good magic in the world, and no possibility of miracles
  • Magic could be defined by faith, such as a bigger purpose, or higher power, someone/ thing that we can’t see but touches our lives. In this way, magic is always there, even during bad luck times
  • Magic could be that the sun rises the next day, and we can too
  • Think about what you’ve achieved. Not the traditional achievements we might think of, but in standing up and supporting another during a difficult time, you bring magic to that, you make that happen.
  • You’ve been magic or a miracle for others in the caregiving work that you do

“Life Lessons From Dad” (Wall Street Journal)

This article is about a son and his wife caring for the son’s parents in the son’s home.  The parents were in their 80s.  The father had a diagnosis of dementia.  The author says:  “Caring for an ailing parent is a life-changing event. Beyond the sadness and suffering, the experience can teach caregiving children a lot about toughness, perseverance and especially love.”

On the Wall Street Journal website (online.wsj.com), there is a 4-minute video interview of the author.  The video can be watched at no charge, after an advertisement.

Here’s a link to the full article about “life lessons from dad”:  (the full article is viewable only if you make a payment to the WSJ)


Life Lessons From Dad — Caring for an ailing parent is a life-changing event; beyond the sadness and suffering, the experience can teach us a lot about toughness, perseverance and, especially, love
By Dave Shiflett
28 June 2014
The Wall Street Journal


A revolution in health care is coming (The Economist)

This interesting lead article in the Economist magazine (economist.com) is about how we will all become our own doctors, leading a health care revolution.

Here’s an excerpt:

Better flow of medical data “is likely to bear fruit in several ways. One is better diagnosis. … A second benefit lies in the management of complex diseases. … Patients can also improve the efficiency of their care. … A final benefit of putting patients in charge stems from the generation and aggregation of their data.”

And a full link to the article:


Treating Behavioral Symptoms of Dementia Without Drugs (Next Avenue)

This article from Next Avenue delves into person-centered care, which focuses on treatments which have an impact without the use of medications. For individuals suffering from neurological conditions, small changes in the environment can lead to positive outcomes.


Most people think of dementia as affecting memory and cognition, and it certainly does. But some of the most distressing symptoms of Alzheimer’s or other dementias are behavioral and psychological.

“What takes a lot of families by surprise are the things like agitation, problems sleeping, getting up and wandering; sometimes people even become violent,” said Dr. Keith Fargo, director of scientific programs and outreach for the Alzheimer’s Association.

Some people exhibiting these kinds of behaviors have been treated with anti-psychotic drugs, which has sparked widespread criticism. And the Food and Drug Administration (FDA) has mandated a black box warning on such drugs with older adults with dementia; they are associated with an increased risk of death.

But there’s an alternative.

“A lot of these [behaviors] can be managed with interventions that are really behavioral in nature, that do not require medication,” Fargo said. Those interventions include reminiscence therapy, music and art therapy, aromatherapy and pet therapy.

New Recommendations for Dementia Care

The use of person-centered, non-drug treatments for people with dementia is one of 56 new dementia care practice recommendations issued in late January by the Alzheimer’s Association.

They are “aimed at helping nursing homes, assisted-living facilities and other long-term care and community care providers deliver optimal quality, person-centered care for those living with Alzheimer’s and other dementias,” according to a statement by the Gerontological Society of America (GSA). The recommendations can be found online here and will be published as a supplement to The Gerontologist, the GSA’s peer-reviewed journal.

Responding to Their Environment

Sheryl Zimmerman, a professor and gerontologist at the University of North Carolina at Chapel Hill, was one of three authors of The Gerontologist’s article on non-drug practices for people with dementia.

She said the behavioral and psychological symptoms that often accompany dementia aren’t just a product of the dementia-affected brain. “Some of those behaviors are due to the interplay of the person with the environment,” Zimmerman noted.

For example: things may be happening too quickly, which can be frightening. There may be a high level of noise or too much stimulation.

Negative reactions may be exacerbated by the typical losses of aging: “An individual who has trouble seeing, for example, may be easily startled and distressed by noises that are not clearly identifiable, leading to anxiety or agitation,” the study said.

But employing non-drug therapies can help the person with dementia have a better quality of life and allow caregivers to do their job. “And it avoids the potential likelihood of giving the person (with dementia) a medication that would sedate them,” Zimmerman said.

Evidence for Non-Drug Therapies

Zimmerman and her colleagues examined 197 articles describing scientific evidence on non-drug practices to treat behavioral and psychological symptoms of dementia.

They fell into these categories: sensory practices (aromatherapy, massage, multi-sensory stimulation and bright light therapy), psychosocial practices (validation therapy, reminiscence therapy, music therapy, pet therapy and meaningful activities), and what are known as “structured care protocols” (particular procedures for bathing and mouth care).

Some of what they found:


A number of studies have looked at the use of aromatherapy for agitation and aggression in people with dementia.

Overall conclusion: Mixed results. The positive outcomes with some patients may have been because they enjoyed the interpersonal and physical benefits of having cream rubbed into their hands, the study said. More large-scale trials are needed.


“Through tactile connection, a person living with dementia may feel comforted and cared about, especially in residential care environments where touch tends to be instrumental and task specific,” the study said. Massage may also be successful in combating the social isolation that can contribute to negative behaviors. And it may spur the body’s production of oxytocin, which can infuse a sense of reassurance and calm.

Overall conclusion: A “small evidence base” shows positive results in the immediate or short term. However, some people dislike massage; that may increase agitation for them. As with any therapy, success depends on whether it’s right for the person being treated.

Bright Light Therapy

Normal aging can prompt sleep disturbances. Dementia can further disrupt a person’s circadian rhythm, resulting in agitation and “sundowning,” an increase in confusion, irritability and moodiness as the day wanes.

Bright light therapy consists of using a special light fixture, light box or visor, or exposure to natural bright light.

Overall conclusion: Mixed results. It may have some benefit, but further research is required. Some studies found it may actually make agitation worse.

Pet Therapy

Pets, particularly dogs, have been used for people with dementia for decades. “Physiologically, quiet interaction with an animal can help lower blood pressure and increase production of neurochemicals associated with relaxation and bonding,” which may in turn reduce the behavioral and psychological symptoms of dementia, the study said.

In small studies, pet therapy has succeeded in reducing disruptive behavior and increasing interactions with others.

Overall conclusion: There is a “small and preliminary” evidence base for pet therapy, even when the pet is a robotic cat or dog. Understandably, pet therapy would not work well for people who are allergic or who have had bad experiences with animals in the past.


Bath or shower time can be particularly upsetting for a person with dementia. It is “the personal care task associated with the highest frequency of behavioral expressions of distress for persons living with dementia,” the study said. Its intimate nature may cause embarrassment, especially if the person being bathed does not recognize the caregiver and does not understand what is going on.

“Years ago, in nursing homes, people used to be hosed down, if you will,” Zimmerman said. Through a protocol called “Bathing without a Battle,” developed at the University of North Carolina at Chapel Hill, those with dementia exhibit far less agitation and resistance.

Overall conclusion: Studies have shown positive results through relatively simple changes such as sponge baths in bed and creating a “spa-like” environment with music or calming sounds. More high-quality studies are needed for the best evidence, the report said.

Each One an Individual

The bottom line, researchers and advocates said, is that everyone is different. Like any older adult, individuals with dementia have their own preferences about their surroundings, their activities and their medical treatments. That’s the basis of person-centered care.

Most of the non-drug interventions have little potential downside. But it’s important to have guidelines, and those guidelines should be based on evidence, Fargo said.

“That’s why we undertook this effort to do a review of the literature, to find out what kinds of care have the evidence base behind it. And it’s important that we disseminate that to the community,” he said.


In Donna Thomson’s blog “The Caregivers’ Living Room,” she posts about caregivers experiencing constant trauma and drama, such that they have become numb.  Donna says: “Hyper-vigilance in order to avoid dangerous and life-threatening consequences of an illness or disability can lead to ‘shutting down’ one’s emotions.”

A trauma response therapist recommends two strategies so that “burnt out caregivers [can] get their feelings back… The first is called ‘interoception’ – it simply means being aware of your body in a purposeful way, the same as in yoga, mindfulness meditation or Tai Chi. The idea is to become more acutely aware of how the sensations in our bodies influence the thoughts in our heads. The second strategy … is reaching out for support – to a medical professional, family, friends, or online.”

Read more.


Today I was speaking with another caregiver. We were talking about trauma.

My friend’s Mom has been progressively losing skills due to a degenerative disease. It wasn’t just the disappearing abilities that hurt my friend, it was the numbness she felt herself. Here’s how she described what happened yesterday. “Mom’s been using a power wheelchair to get to the dining room where she lives in assisted living. But recently, she’s become unsafe driving it – she’s running into walls and people. So yesterday, I took it away. I did it mechanically, I just felt numb. This was a BIG deal and I didn’t feel anything. But I went home and I realized that I should be hurting for Mom. I hate this. I hate being numb. I LOVE my Mom.”

I’ve experienced numbness in my caregiving life and I’m betting that most other long-term carers of loved ones with chronic disease or disability have experienced it too. I decided to ask my niece Christina Opolko about this symptom of stress and exhaustion. Christina is a licensed drama therapist and is highly trained in trauma response therapy.  Here’s what she said:

“I think as traumatic moments and major traumas accumulate, they become something called complex trauma. Over time, when the body goes into overwhelm, some people train themselves to override their feelings (sometimes called ‘functional freeze’) in order to keep functioning. This is a symptom of complex trauma. Over time, this can lead to loss of identity, inability to claim space beyond the caregiving role, and a near constant anxiety regarding self and other, without a clear root cause….the cause has been cumulative.

So I think the cause of feeling numb is complex trauma, overriding one’s emotions and, I would add, forced accommodation. In trauma, if you are forced to accommodate constantly to someone’s needs, there is a needs imbalance, and over time, it too can feel like trauma. The body cannot distinguish trauma from shutting your needs down to serve another under stressful circumstances. The two feel the same. The neurophysiological response is the same in both extreme stress and in suppressing your needs in order to attend another.”

I might add one more cause: hyper-vigilance over a long period of time. Hyper-vigilance in order to avoid dangerous and life-threatening consequences of an illness or disability can lead to ‘shutting down’ one’s emotions, in my experience. Being on high alert for the sake of someone’s life and limb is a good reason to use whatever coping mechanisms are at hand, even emotional numbing.

So, how can burnt out caregivers get their feelings back? Christina advises two strategies to begin. The first is called ‘interoception’ – it simply means being aware of your body in a purposeful way, the same as in yoga, mindfulness meditation or Tai Chi. The idea is to become more acutely aware of how the sensations in our bodies influence the thoughts in our heads. The second strategy that Christina is reaching out for support – to a medical professional, family, friends, or online. Seeking support may seem like a trite or even useless suggestion to caregivers whose emotional range has flatlined. “What’s the point of talking to anyone?” could well be a symptom of being overwhelmed by a sense of futility.

Is emotional numbing a good coping mechanism? Maybe sometimes, it can be. But mostly (in my experience), it is better to cry, much better. And my worry that if I started to cry, I would never stop was unfounded. I cried, yes, but then I stopped and I carried on. We all do. I reclaimed my feelings by asking myself, “What do I feel right now? Where are my muscles tight? Where are they relaxed? How does this orange taste in my mouth? Which muscles move when I swallow?” And I reached out to my family, my friends and my fellow caregivers. For me, nature was and is a great healer, too. Being in my garden, walking in the woods, even standing at the window looking at the rain all heal my heart and soul making me MORE emotional, ready to sense my body and especially the bodies and emotions of those I love.

SHARE program available to some caregivers in the Bay Area

This blog post will be of interest to those living in the San Francisco Bay Area, who are caring for those age 60 or older without dementia.

Northern California-based Family Caregiver Alliance (caregiver.org) is
organizing a free educational program called SHARE.

Within Brain Support Network, three types of caregivers are eligible —
* PSP caregivers not dealing with dementia
* CBD caregivers not dealing with dementia
* all MSA caregivers

The care receiver (person with a neurological diagnosis) must:
–  Be over age 60
–  Be living at home in the San Francisco Bay Area
–  Have intact cognitive abilities – NO dementia
–  Not be in the terminal stage of their disease

The caregiver will receive:
–  6 in-person home visits
–  Learn effective communication skills
–  Learn to reduce stress
–  Learn to promote health
–  Learn about long-term care management (make the most out of today
while planning for tomorrow)

If this is of interest, contact Michelle Venegas (415-434-3388, x323,

[email protected]) at Family Caregiver Alliance.