Dementia To Test U.S. Health System, Experts Warn

Dementia To Test U.S. Health System, Experts Warn

Posted on Thursday, April 23rd, 2015 at 8:01 am by lifemediamatters

Seriously ill patients suffering from dementia will test the strength and resilience of the American health care system, experts warn.

It is estimated that every 67 seconds, someone in the U.S. becomes diagnosed with dementia. The population is expected to increase dramatically as millions of baby boomers age.

“This is an important population. In 2000, it was 4.5 million, by 2050, it’s estimated 16 million Americans will have dementia. Median survival from diagnosis is three to six years,” said Dr. Joan Teno, associate director of the Center for Gerontology and Health Care Research at Brown University Medical School, who addressed a crowd at the University of Chicago’s MacLean Center for Clinical Medical Ethics this month.

Dr. Joan M. Teno

Dr. Joan M. Teno

“A lot of what dementia involves is custodial care, it’s a taxing thing, we call it the 36-hour day, because of how much caregivers have to do in caring for this population,” Teno said.

Decline occurs rapidly among patients with severe symptoms, because they are often bed-bound, have difficulty swallowing and eating, and suffer other serious complications, like painful ulcers.

It is also common, Teno said, for patients suffering from severe dementia to transition to multiple  care settings in the last years of life and receive unwanted, often costly, medical interventions.

“I think that this pattern of health care, where we are always moving patients in-and-out of the hospital is potentially creating harm,” Teno said. “It leads to higher rates of getting feeding tubes and higher rates of late referral to hospice.”

Hospice care is designed to comfort dying patients in their last months of life.

Exploring costs of dementia

Comparison of a normal aged brain (left) and the brain of a person with Alzheimer's (right). Differential characteristics are pointed out. Courtesy WikiMedia Commons.

Comparison of a normal aged brain (left) and the brain of a person with Alzheimer’s (right). Differential characteristics are pointed out. Courtesy WikiMedia Commons.

One of the most comprehensive studies on the costs of dementia determined that the debilitating and progressive disease is more expensive than heart disease and cancer, costing society and families around $200 billion a year. The costs of dementia-related care and the number of people with it will more than double by 2040, according to a widely circulated 2013 study published in The New England Journal of Medicine.

Researchers, supported by the RAND Corporation, determined that dementia leads to total annual costs of $41,000 to $56,000 per case in the U.S., totaling up to $215 billion in 2010.

More troubling were calculations that estimate that the aging population will lead to an increase of almost 80 percent in total costs by 2040.

The National Institutes of Health (NIH) defines dementia as the loss of cognitive functioning— thinking, remembering and reasoning— and behavioral abilities to such an extent that it interferes with a person’s daily life and activities. Many conditions and diseases cause dementia, but the most common cause in older adults is Alzheimer’s disease.

Most dementia-related costs stem from long-term institutional and home-based care, not medical care, partly because there is no cure. Nursing home, formal and informal care account for up to 80 percent of the costs.

“Elderspeak”: Words Can Hurt

Posted on Wednesday, November 26th, 2014 at 4:07 pm by lifemediamatters

Getting On Screen Grab. Courtesy HBO

Getting On frame. Courtesy HBO

As the plot unfolded in the season premiere of HBO comedy, Getting On, I noticed the excessive use of “toddlerspeak” directed at elderly patients within the community hospital’s hospice unit. Whenever a physician or nurse was speaking to a patient, they tended to use baby talk—with a high pitch, lilting tone, longer space between words, elongated space around vowels, and simple, shortened words. When speaking to a baby or a toddler, such tones may help children learn language, provide amusement and get their attention. This show’s characters, however, were ones who had lived a long time; they were far older than the providers themselves. In one instance, a physician talked to a patient- a former physician- as if she were an infant.

Some patients suffered dementia, but others were perfectly capacitated. They had lived full lives and continued to enjoy meaningful lives—having raised families, pursued careers, taken care of themselves and others, and made societal contributions. However, they were being spoken to as if they were two years of age.

I wondered whether this blatant disrespect was only a television invention or something real. A New York Times piece in 2008 discussed how not just in medicine, but in many areas, some use terms like “sweetie” and “dear” when speaking with seniors. In a 2010 study and a 2009 study, researcher Kristine Williams found that seniors who are spoken to in “elderspeak” tended to be more resistant to care. Such speech signals that the senior is incompetent- accelerating a downward spiral and enhancing feelings of dependency.

Rather than viewing seniors as vulnerable and frail, we should temper that vision with thinking instead about the full life they have lived.

A physician at a large community hospital told me once that he often talked with senior patients this way. The physician never used terms like “sweetie” or “dear” outside of work, but he found himself using that language among the elderly he treats. His mentors did it, as well. “It’s just part of the culture,” this physician said.

Another friend from a family of physicians and attorneys told me about a loved one recently hospitalized after surgery. A nurse on duty told the patient that the “the boo boo” would hurt for a bit, and that she would have pain from “the ouchie.”

Another friend- a younger senior citizen- told me that she is always referred to as “baby” when she visits her doctor’s office.

During medical school, students learn the often difficult tasks of putting patients at ease and delivering bad news. However, I do not recall any curricula about how to speak specifically with seniors. Given the massive shortage of gerontologists, it is important for all providers- especially those in primary care- to learn to shun “elderspeak.” Such language decreases well-being, and it is demeaning. Patients who have lived full lives deserve to be addressed with respect, understanding and dignity. Infantilizing them through “elderspeak” is detrimental to the goals of medicine and to basic human kindness.

Rather than viewing seniors as vulnerable and frail, we should temper that vision with thinking instead about the full life they have lived. Given the prevalence of this phenomenon, it is something we must all be aware of and avoid.

Facing Alzheimer’s With Family

Posted on Wednesday, July 30th, 2014 at 8:43 am by lifemediamatters

The Genius of Marian intimately explores the devastating effects of Alzheimer’s disease on a close-knit Northeastern family. The documentary, directed by married couple Anna Fitch and Banker White, focuses on Banker’s 61-year-old mother who is struggling with early-onset Alzheimer’s disease.

The film, made of blurry home movies, one-on-one interviews and family photos, opens with a scene from their 2009 Christmas celebration. Pam White offers her family a jar of macadamia nuts, but mistakenly refers to them as “acadania nuts,” foreshadowing a sharp decline in her cognitive abilities.

Pam, a former model and social worker, often smiles and retains a sense of elegance throughout the film’s most difficult moments. In one extended scene, she is unable to remember how to put on her coat and scarf. In another, she struggles to enjoy a fishing trip at the lake, to the annoyance of her husband, Ed, who serves as her primary caregiver. Not one scene is glamorized.


Pam White faces early-onset Alzheimer’s. Still from “The Genius of Marian.”

We learn that in 2008, Pam decided to write a book about her mother, acclaimed painter Marian Williams Steele, who died in 2001 from complications associated with Alzheimer’s. One year into the project, Pam was diagnosed, and was never able to finish it.

“I’ve never made a personal film before. The desire to move home, because we were based in San Francisco, was initially to help my dad out and make sense of things,” Banker told Life Matters Media. “I think it became clear that it could be a very powerful thing to share with other people. The film even helped our family communicate better.”

Anna first became acquainted with Pam through the earliest video recordings. “It made me think about my relationship with my parents,” she said. “I thought this would resonate universally.”

Early in the film, Pam seems to be in denial about her diagnosis. In a tense scene recorded while driving, Banker asks if she remembers her mother’s decline. “She had Alzheimer’s, and I don’t,” she replies. “Didn’t the doctor say that you did have early-onset Alzheimer’s?” Banker asks. “Careful!” Pam says, focusing her attention on the road. She is upset because she can no longer simply take the car and drive to the grocery store.

“There are definitely things that are awkward, but in a documentary you are tasked with managing a relationship between you and your subjects and being honest with the audience,” Banker said. “Alzheimer’s is such an isolating disease, because of the stigma attached with it and the requirements it puts on caregivers.”

According to the Alzheimer’s Association, nearly six million Americans face the irreversible disease, a number expected to increase as the baby boomer generation ages. Nearly one in six women 65 and older will be diagnosed in their lifetimes.

One of the most difficult effects of Alzheimer’s on family and friends is the slowness of the decline, Banker added.

“You are constantly reminded of who this person used to be, while you’re simultaneously losing this person, so there is no space for mourning. You are kind of overwhelmed with the responsibilities of caring and redefining your relationship,” he said. “But there is also a special side, because it does give you time. Some of the most special moments with my parents have happened over the last four years.”

Anna said she believes a lack of hope and response from patients is one of most difficult parts of the disease. “You’re caring for someone who is able to give you less and less as things get more difficult, and that’s just hard,” she added. “There is also no room for hoping it will get better, that there will be a better path ahead.”

In an effort to help patients and families share their experiences, Anna and Banker said they hope to launch an interactive story sharing website in the coming weeks.

The Genius of Marian, an official selection of the 2013 Tribeca Film Festival, will be broadcast across the nation Sept. 8 as part of the PBS series POV.

Casey Kasem’s End Of Life Drama: A Lesson For The Rest Of Us

Posted on Tuesday, June 17th, 2014 at 8:24 am by lifemediamatters

This piece was first published in Reuters Health. LMM President Randi Belisomo is a contributor.

The dysfunction and drama of the final months of Casey Kasem, a radio personality who died Sunday from complications of dementia, captured the interest of generations who listened over the years as he counted down the nation’s top pop.

But what Kasem did for four decades on the radio, says end-of-life planning expert Nancy Berlinger, is what he failed to do with his own family before dementia rendered him unable: communicate.

Kasem’s advance directive, stating he did “not desire any form of life-sustaining procedures, including nutrition and hydration,” assigned his daughter as surrogate healthcare decision-maker.

His daughter’s authority, however, was contested by her stepmother, Kasem’s wife. Allegations of kidnapping and starvation played out in courtrooms. Kasem’s wife performed a dramatic interpretation of a Biblical scene for news cameras, throwing raw meat in the street in exchange for her husband “to the wild rabid dogs”- her stepchildren.

Kasem’s situation was “a doozy of a case,” added Berlinger, lead author of The Hastings Center Guidelines, a framework for end-of-life decisions.

Kasem at the 1989 Emmy Awards. Courtesy WikiMedia Commons.

Kasem at the 1989 Emmy Awards. Courtesy WikiMedia Commons.

Kasem did take “two steps most people don’t,” Berlinger told Reuters Health. “He authorized a proxy decision-maker, and he gave specific information about treatment preferences.”

But, she pointed out, broadly-stated medical options in advance directives often require further considerations about real-life issues. “There may have been the assumption the document would have magically taken care of everything,” Berlinger said.

Kasem’s directive stated his wish for no life-sustaining treatment if it would “result in a mere biological existence, devoid of cognitive function.”

Berlinger said preferences should prompt patients and families to discuss points at which life loses individual meaning; examples include an inability to communicate or address hygiene. Those changes in condition can signal times when life-sustaining measures may be suspended. Without conversation, preferences may be unclear. “What does it mean to have ‘no cognitive function’?” Berlinger asks.

The way to answer that is to ask the patient directly, said Daniel Johnson, a Kaiser Permanente Care Management Institute palliative care specialist. “It’s not uncommon for people making decisions to do it alone,” Johnson told Reuters Health. “The problem is the best-laid plans depend not only on medical infrastructure, but infrastructure of the family.”

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The End Of Life Lessons From Casey Kasem’s Family Feud

Posted on Monday, June 16th, 2014 at 11:42 am by lifemediamatters

This piece was first published in Voices in Bioethics. LMM President Randi Belisomo is a contributor.

American music fans have lost an icon. In recent weeks, the dysfunction and drama of the last days of Casey Kasem, a radio personality who gained fame counting down the country’s top pop, pervaded national headlines. Though family infighting among the famous was certain to capture the media’s interest, such conflict is sadly not unique in end-of-life cases such as his. Those who followed this saga stand to learn a much-needed framework of multi-party communication from what went wrong here.

The Case

Kasem, 82, suffered from Lewy body disease, a progressive dementia. In 2007, he signed papers extending power of attorney for his health care to his daughter Julie; the directive stated Kasem’s desire for no “life-sustaining procedures.” However, Julie, her sister Kerri, and their brother contended that Kasem’s wife since 1980, Jean, prevented them from visiting their father.

Kasem at the 1989 Emmy Awards. Courtesy WikiMedia Commons.

Kasem at the 1989 Emmy Awards. Courtesy WikiMedia Commons.

In May, Kerri won court approval to see Kasem. However, Jean expressed displeasure to reporters, playing an audio recording of a groaning man she maintained was her crying husband. Jean threw meat in the street, citing scripture as an ambulance took her husband away. “In the name of King David, I threw a piece of raw meat into the street in exchange for my husband to the wild rabid dogs.”

The drama continued in the courtroom, where Kerri won temporary conservatorship. But Kerri was unable to execute such responsibility without knowing his whereabouts; according to Kasem’s children, he was “isolated from his daughters, friends and other family” by his wife.

A judge later decided Kerri had the right to honor his directive to withhold food, hydration, and some medications, and she opted to transition him into hospice. Kasem’s children released a statement, quoting his advance directive:

“If the extension of my life would result in a mere biological existence, devoid of cognitive function, with no reasonable hope for normal functioning, then I do not desire any form of life-sustaining procedures, including nutrition and hydration.”

Jean opposed this decision and promised to pursue all legal options on her husband’s behalf. Her attorney maintained that Kasem was being “starved and cut off from medicine until he dies.”

What Went Wrong

Family conflicts regarding end-of-life decision-making are common; as such situations would be stressful for any family. That stress was amplified, in this case, by the media spotlight. Conflicts in such stressful times often arise because patients have not expressed their wishes and values regarding their health care, and patients also fail to appoint surrogate decision-makers.[1]

But in this case, the patient took proactive steps to ensure his care preferences would be clear. Kasem appointed a surrogate and documented his wish for no life-sustaining measures.

Though he completed paperwork, it seems that what Kasem did for a lifetime through our radios is what he failed to do within his own blended family: talk.

The facts suggest the strained relationship between Kasem’s wife and children was such for years, and this conflict was one he should have seen coming. Without such conversations explaining his wishes and reasons behind them, Kasem deferred conflict to a later day – and that day arrived.

Conflict was inherent upon completion of his advance directive, as Kasem’s surrogate and main caregiver were different individuals. Kasem was obligated to take that difference into account and ensure both parties understood the scope of their roles.

“You want to communicate this information,” says Nancy Berlinger, a lead author of the Hastings Center Guidelines.[2] “It’s a problem when a person makes an advance directive, and the only person who understands its context is their lawyer.”

Not only would Kasem’s surrogate be empowered with greater understanding of the values upon which his preferences rested, his family infrastructure would have likely been strengthened by such personal disclosures with all parties gathered.

“If you really want to look at how to prevent situations like this, you need to have these conversations with not only surrogates, but with other loved ones,” says Daniel Johnson, the National Clinical Lead for Palliative Care with Kaiser Permanente’s Care Management Institute. “When people take the time to have those informed discussions with family to ask the right questions to explore preferences with all important parties, you almost never see this.”

Kasem’s family would have received guidance about their roles from the patient himself, and perhaps they would also have understood exactly what he meant by his desire for no life-sustaining measures if “devoid of cognitive function.” While Kasem’s daughter believed he was in such a state, his wife’s vow to pursue legal action suggested she understood his condition differently. “There may have been the assumption that this document would have magically taken care of everything,” says Berlinger.

Unfortunately, end-of-life planning is often reduced to a “check-box” approach of medical options, with little understanding among patients and families as to what options actually denote. What does it mean to “lack cognitive function”? What is it to have a “mere biological existence”? More detail is required than loosely stated preferences, and the way to ascertain the meaning of those preferences is to have asked Kasem directly.

At their best, these conversations should expand beyond treatment preferences; discussions should explore considerations of real-life issues. Examples of these considerations are descriptions of what made Kasem’s life “worth living” – quality of life discussions to unravel what he valued. Was it the ability to communicate with loved ones? Perhaps the capacity to hear the music he played for generations of young Americans? The ability to maintain his own hygiene? We never knew, but his family should have.

When we read cases like Kasem’s, we are best served by allowing his tragedy to prompt our own end-of-life planning. Complete your advance directive, and if you already have – locate it. Discuss its contents with key loved ones, explain their roles, and let them know how they may best ensure your preferences are executed. We all can play disc jockey of our health care choices: don’t let your broadcast include dead air.

[1] Teno JM, Licks S, Lynn J, et. al. “Do advance directives provide instructions that direct care? SUPPORT Investigators.” Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Journal of the American Geriatrics Society [1997, 45(4):508-512].

[2] Berlinger, N., Jennings, B., and Wolf S.M. (2013) The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life: Revised and Expanded Second Edition. Oxford University Press, 2013