Category: Caregiving

Covering news of the family, friends, partners and neighbors of those providing care for the elderly, as well as for the chronically and terminally ill.

Helping Chicago’s Chinese American senior community

Many Chinese American seniors in Chicago suffer psychological distress, physical limitations and financial hardships, according to The Pine Report, a new study about the health and well-being of older adults.

Image: Wikimedia Commons
Image: China Town, Chicago via Wikimedia Commons

The Chinese American Service League, a nonprofit providing in-home aid and day services to more than 900 Chicago seniors, partnered with Rush University Medical Center for the report. From 2010 to 2013, researchers conducted face-to-face interviews with more than 3,000 seniors between 60 to 105 years old.

“Seniors are our biggest focus,” said CASL President Bernarda Wong, who helped form the organization 34 years ago with her friend and colleague, Esther Wong.

More than 75 percent of the community served at the CASL speaks and reads Chinese only at home, according to the report. Another 20 percent prefers Chinese. The league devotes resources to new immigrants who do not understand English. ”Sometimes the elderly come in with federal documents and mail they cannot understand, so we help them,” said Bernarda Wong.

More than half of the community’s seniors suffer from one or more limitations to carrying out instrumental activities of daily life, such as managing money, preparing meals or housework. ”We train volunteers to do household chores and go into the homes of the seniors” Bernarda Wong said. About two-thirds of the seniors served suffer from more than one chronic illness.

But despite the league’s vast assistance to thousands of Chinese Americans, many of them still sidestep discussions about end of life and advance care planning, said Debra Chow, an elderly service social worker with the nonprofit’s in-home care services. “It is too taboo for them. End of life is something very scary to all of us.”

“That is not a topic that we have touched on a large scale,” Bernarda Wong said, although noting the growing need for such discussions. “We are eager to work with Life Matters Media, to plan a seminar and allow our clients to ask questions and soak in information,” Chow said.

“Many seniors do not want to bother their families, so they keep it to themselves,” Bernarda Wong said.

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Pain should not be a symptom of aging, says Rainbow Hospice Medical Director

POLST Illinois moves forward

Vermont votes to allow “Death with Dignity”

Life Matters Media participates in “Great Challenges”: Caregiver crises

Life Matters Media is proud to participate in the TEDMED “Great Challenges” program, sponsored by the Robert Wood Johnson Foundation. The caregiver crisis has been designated as one of the twenty “Great Challenges” in health and medicine. The program’s mission is not to solve the caregiver crisis, but to provide unbiased, inclusive viewpoints of the challenges from a multidisciplinary perspective.

At the conclusion of TEDMED 2013, Life Matters Media was pleased to take part in “Great Challenges Day,” held at George Washington University, in which participants explored how storytelling and narrative framework can be used to gain a deeper understanding of the caregiver crisis. Storytelling is at the core of what our organization aims to do as we prepare to launch our full digital platform in the coming weeks, and the “Great Challenges” program shares our belief that greater understanding in health care and decision making stem from sharing true narratives- not data.

Below is the “Discovery Doodle” by graphic recorder Robbie Short, depicting some of the challenges offered by program participants in coming to grips with the caregiver crisis.

"Discovery Doodle"
“Discovery Doodle”

An estimated 44 million people provide care for the elderly, disabled, sick and injured. Caregivers have few tools and few support systems as they carry out their tasks, and they receive minimal, if any, training for these responsibilities.

Here are some of the contributing factors that make the caregiver crisis such a pervasive health and social problem, as offered by “Great Challenges” team members:

-Lack of recognition by payers, providers, employers and regulatory agencies on the value and financial impact family caregivers bring the health care system. (Cheri Lattimer, Consulting Management Innovators)

-Emotional isolation and lack of support (paid and unpaid) to help a family caregiver balance his or her life. (Suzanne Geffen Mintz, National Family Caregivers Association)

-The graying of the U.S. – 10,000 Americans turn 65 every day (Alan Blaustein, CarePlanners)

-Randi Belisomo

More from the Life Matters Media Newswire:

Hope or Denial in the Face of Death?

Preparing for the dementia tsunami, a TEDMED discussion

Death over dinner? There’s an appetite for it

Hope or denial in the face of death?

Pulitzer Prize winner recounts personal love story

Bennett 8.57.34 AM
Bennett family picture

What medical experts call denial, Amanda Bennett calls hope.

The Pulitzer Prize winning journalist and caregiver to her husband, Chinese historian Terrence Foley, sought to reframe the role of denial in the face of terminal illness during her presentation at the TEDMED 2013 conference in Washington, D.C.

“Denial isn’t even close to a strong enough word to describe what those of us facing the death of our loved ones go through,” says Bennett, whose recent book, The Cost of Hope, outlines the story of her quarter century romance with Foley, with whom she traveled the world and had two children.

Despite his cancer diagnosis, Foley thrived personally- traveling with his family to multiple continents, coaching Little League and even earning his Ph.D. in his 60s.

“We had a heroic narrative for fighting together, but we didn’t have a heroic narrative to letting go.”

Mysteriously, Bennett says, he continued to surpass all expectations. Meanwhile, she buried herself in internet research in search of a cure that was not to be found.

His health dramatically declined in December 2007, and as Foley began to spit blood during what would be his last stay in intensive care, his doctors asked Bennett what she wanted them to do.

The couple had advance directives in place, directives that ordered doctors to do nothing if no further hope was to be had.

“Keep him alive if you can,” she told his physicians. After all, Foley had repeatedly dodged all dire predictions for the past seven years and had recently started a new regimen of experimental therapy. Bennett continued to hang on to the slightest of indications that he could continue to live.

As her husband’s health worsened over the next week, she grew more resolute. “We believed if we were smart enough, strong enough, brave enough and worked hard enough, we could keep him from dying forever,” Bennett recalls.

But Foley died December 14th, 2007, and Bennett says she never said goodbye.

“We pushed the fight right over the edge, and I never got the chance to say to him, ‘hey buddy, it was a hell of a ride,’ ” Bennett remembers, noting in retrospect, that no wife- no matter how hard she tries- can stop the bravest of husbands from dying when it is his time.

Hope

Bennett would not consider hospice, because to her it meant defeat.

“We had a heroic narrative for fighting together, but we didn’t have a heroic narrative to letting go,” Bennett says, suggesting there are many “noble” paths available for curing disease, but no such culturally “noble” path to die.

If she had been able to shift her perspective, she says, perhaps watching Foley die would have been easier on them both. That perspective could be broadened: from fear of hopelessness at the end of life to, instead, repeated victories in the face of cancer, a lengthy battle, and then a graceful retreat in death.

“Not even the greatest general defeats every foe,” Bennett says, and such a framework of a triumphant, manly crusade through illness into death would have been a much more workable mindset than hope- and the subsequent lack of it.

Death, she argues, is not the enemy, but she knows most think it is.

“I believed I could keep him from dying, and I would be embarrassed to say that if I hadn’t met so many people who have felt the same way.”

For more of Bennett’s story: thecostofhope.com

-Randi Belisomo

More from the Life Matters Media Newswire:

Preparing for the dementia tsunami, a TEDMED discussion

Death over dinner? There’s an appetite for it

End of life questions from Catholics tackled at National Healthcare Decisions Day symposium

Dementia more costly than cancer, will become more common

Image: Pixabay, Gerd Altmann via Creative Commons
Image: Pixabay, Gerd Altmann via Creative Commons

Researchers determined dementia leads to total annual societal costs of more than $40,000 per case in the U.S.

The most comprehensive study on the costs of dementia shows the 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 suffering from the disease will more than double by 2040, according to research supported by the RAND Corporation, financed by the government and published in The New England Journal of Medicine.

Key findings

Researchers determined dementia leads to total annual societal 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 the aging population will lead to an increase of almost 80 percent in total costs by 2040.

Most dementia-related costs stem from long-term institutional and home-based care, not medical care. Nursing home, formal and informal care account for up to 80 percent of the costs. These estimates place dementia among the most costly diseases.  In 2010, almost 15 percent of Americans 70 and older suffered dementia.

By 2040, nine million people will have the disease. “I don’t know of any other disease predicting such a huge increase,” Dr. Richard J. Hodes, director of the National Institute on Aging, told The New York Times. “As we have the baby boomer group maturing, there are going to be more older people with fewer children to be informal caregivers for them, which is going to intensify the problem even more.”

Still, the findings are more conservative than previous calculations from the Alzheimer’s Association, which estimated that in 2010 the monetary costs alone were $170 billion, as compared to $110 billion.

Figuring costs of dementia

It is notoriously difficult to glean accurate data about the costs of dementia over time, which makes the new findings especially important to the medical community and financial institutions.

Dementia is a chronic disease associated with aging and is characterized by progressive cognitive decline, mostly affecting seniors already suffering from other ailments. This makes its financial implications difficult to separate.

Secondly, most of those suffering from dementia are looked after by caregivers, many unpaid, making it difficult to estimate monetary costs for caregivers’ time.

The researchers began with some 11,000 people from a long-running government health survey called the Health and Retirement Study, which began in 1992. They surveyed more than 800 of the people aged 51 years or older. To get a strong representation of dementia, those respondents underwent a three-hour in-home clinical assessment. Those results were then reflected upon the larger group.

Researchers then analyzed Medicare records and patients’ out-of-pocket expenses. Foregone wages from family caregivers who gave up work to care were tabulated, as were estimates of what the care may have cost if bought from formal providers. Spending on all other ailments, such as diabetes and high blood pressure was subtracted.

Dr. Kenneth Langa, a University of Michigan researcher who helped with the research, told ABC News, ”This is an important difference” from other studies that did not determine how much health care cost was attributable to just dementia.

President Barack Obama signed the National Alzheimer’s Project Act into law in January 2011; it aims to track costs of dementia and improve the health outcomes of those living with the disease.

Learn more from the Life Matters Media Newswire:

Connecticut assisted suicide bill finally gets a hearing

LMM co-founder Randi Belisomo interviewed by the Association of Health Care Journalists

More male caregivers emerge as demographics shift

More male caregivers emerge as demographics shift

As millions of baby boomers enter retirement and as medical technology allows seniors to live longer than ever, more men are becoming caregivers for their loved ones, upending stigmas that caregiving is the work of women. As a 2012 Pew Research analysis on family caregiving shows, 45 percent of U.S. caregivers are now men.

Couple by George Hodan
Couple by George Hodan

The increase has been swift and substantial. Just about fifteen years ago, only some 19 percent of those looking after older or disabled family members were men, according to ABC News and the National Alliance for Caregiving.

“[I]ncreasingly men are being thrust into (or welcoming) the role of caregiver- for their children and/or aging parents- while working full-time jobs,” writes caregiving expert Alexis Abramson for The Huffington Post.

Cultural changes about what constitutes masculine and feminine work also seem to be contributing to the rise in male caregivers.

According to analysis from Leann Reynolds, a contributor to the Good Men Project, “Such an increase in the proportion of male caregivers can be explained by a combination of social and demographic changes,” such as the greater geographic separation of family members, smaller families and shifting gender roles.

As Richard Nix, executive vice president of Aging Care, told ABC News, ”It’s OK for men to cry now.”

Workplace discrimination

Still, some male caregivers face discrimination from the workplace for their time spent caregiving. According to Abramson, male caregivers may “unfortunately face a tougher time than women from employers who are used to caregivers being, well, women!”

She writes how male caregivers are more likely to be victims of “caregiver stigma,” as caregiving is associated with feminine traits, that she insists, are not yet valued in the workplace. ”Sadly a man who requests time off to take his elderly mother to a doctor’s appointment might just as well be announcing plans to attend a retreat ‘to get in touch with his feminine side,’ ” Abramson writes.

Similarly, Fortune and CNN Money report that the growing number of men taking on caregiving roles has contributed to the overall spike in employee discrimination claims, analysis confirmed by the Equal Employment Opportunity Commission.

“Employers are often more relaxed in applying blatant sexual discrimination against male caregivers,” Elizabeth Grossman, an attorney in the EEOC New York district, told Fortune. “When invoking parental leave, some supervisors might say ‘Oh no, that’s for women.’ There are some pretty entrenched stereotypes.”

The Center for WorkLife Law reports how one man was told by supervisors he would be “cutting his own throat” if he took time off to care for his sick father.

From 2006 to 2010, 147 family responsibility discrimination cases brought by male plaintiffs were decided in court, according to data from WorkLife. Fortune estimates this data reflects a 300 percent increase compared to the number of such decisions from 2001 to 2005.

Learn more from the Life Matters Media Newswire:

As Americans live longer, organ donations suffer

Find out what goes on within your local hospital

GSN’s David Goldhill: “American health care killed my father”

Bed sores: New technology decreases occurrence

Bed sores, the unsightly and preventable ulcers afflicting millions of seniors confined to wheel chairs or bed rests may soon become less common with pressure mapping technology. New findings published in the journal Wounds show a 60 percent decrease in severity of sores when clinicians turned patients in accordance with map technology recommendations instead of their own schedules.

Wounds: Figure 1
Wounds: Figure 1

Bed sores develop when pressure on the skin reduces blood supplies to capillaries at the surface. Also known as pressure sores, they are most common on skin that covers bony areas of the body, such as the heel, hips or buttocks. These painful sores heal slowly and are susceptible to infections.

Despite advances in bed technology from 1993 to 2006, the number of hospitalizations for pressure ulcers reported to Medicare has increased 80 percent, partly because of the aging population, lead researcher and surgeon Matthew Q. Pompeo, M.D., writes. Those living longer become frailer and immobile, making them more susceptible to bed sores.

“As more frail patients are becoming more numerous, it is clear providers need more tools in their armamentarium to prevent and treat pressure ulcers,” Pompeo writes.

Health TechZone reports bed sores cost the health care system about $11.5 billion annually.

What is MAP technology?

The technology, developed by Nashville-based Wellsense Inc., is a thin mat placed on a mattress. The mat has thousands of sensors that feed into a monitor. The sensors display specific areas of pressure to provide live feedback to nurses as they reposition patients.

The device boasts three components to help reduce pressure. Live images of a patient’s body appear on the monitor with high-pressure areas in red. This points clinicians to the areas that need adjustments. There is a timed alarm to alert caregivers when a patient needs turning. Lastly, the mat records patient movements if further review is needed.

Pompeo studied forty-three patients with pressure ulcers at a long-term care facility in Texas who began using these mats.

According to Pompeo, after two hours, if patients remained in a sedentary position they entered the “damaging time.” Prior to the use of these mats, patients waited another two hours before being turned- totaling more than four hours. Once the mats were adopted, turning time decreased to only 44 minutes- less than three hours.

Since time after two hours is damaging to tissue, the reduction to 44 minutes represents potential for 63 percent less damage.

The technology is likely to become much more sophisticated as it matures. Pompeo notes, “Measuring pressure relief for patients with pressure ulcers is so obvious it is hard to imagine it will not eventually be part of mandated quality initiatives.”

Learn more from the Life Matters Media Newswire:
Projects get people talking about end-of-life

An OP-ED for PBS: Inequalities in the health care system

Texas bill would clarify end-of-life treatments 

Combating malnutrition: Nine percent of seniors suffer

It’s an epidemic that to most of us, is invisible. A staggering four million seniors- almost one and ten- will suffer from malnutrition, according the American Academy of Family Physicians. The impact of malnutrition upon a senior is all-encompassing, often resulting in depression, improper healing and a depressed immune system.

Image courtesy A Place for Mom
Image courtesy A Place for Mom

Dr. Lindsey Jones-Born, a licensed naturopathic physician, has provided a list of ways to combat and identify malnutrition in seniors. She writes that eating can often be uncomfortable for seniors, due to physical changes like dental problems or weakened taste buds. Lack of support or companionship often intensifies these changes. “Seniors face a plethora of challenges when it comes to maintaining a nutritious diet,” Jones-Born writes.

To help recognize senior malnutrition, Jones-Born recommends taking stock of a loved one’s pantry and refrigerator. Checking specifically for old food and taking note of food amounts can reveal what is being consumed. It may also be helpful to watch for sudden weight loss and the fit of clothing.

She encourages five essential nutrients as part of seniors’ diets: Folic Acid, B12, vitamins C and D, and fatty acids. Plenty of water is also important, as some 30 percent of seniors are chronically dehydrated.

Income and malnutrition

Low income often results in malnutrition in seniors, according to The New York Times’ Paula Span. Last year, Span reported that the Government Accountability Office pointed to “food insecurity” as a major problem affecting seniors.

In 2009, some 20 percent of households with a low-income person over age 60 struggled with food insecurity. “These adults were uncertain of having or unable to acquire enough food because they lacked resources,” according to the report.

According to the G.A.O. report, “Older adults can and do access a number of resources to help alleviate food insecurity; however, many low-income older adults likely to need assistance from meals programs did not receive it.”

Learn more from the Life Matters Media Newswire:

Death Cafe: A movement discusses end-of-life

LMM’s Valentine’s Day message in The Huffington Post

Hospice remains a last resort, despite increase in deaths

The lack of advance care planning persists

Image: CDC
Image: CDC

Although more affordable senior care services are emerging as the U.S. population continues to age, most still do not plan for end of life care, as The Associated Press’ Matthew Perrone reports.

“Nobody wants to go to a nursing home, it’s the last resort,” James Firman, president of the National Council on Aging, told the AP. “People want to stay in their own home, and if they can’t, they want to go to a place where they can get assistance but that still feels homelike.”

Nursing homes continue to be the most intensive and expensive form of long-term care, which often includes 24-hour medical supervision, the AP reports. The average cost of a semi-private room in 2011 was $81,000, according to a survey by MetLife. A private room can cost more than $90,000, as the average daily rate for a private room in a nursing home rose more than 4 percent in 2011.

Most seniors will not require extended nursing home care. However, Medicare does not cover less intensive care options, such as in-home help with meals and chores.

“The issue is that these are long-term costs and almost all of it comes out of pocket,” said John Migliaccio, director of research for Metlife’s Mature Market Institute. “It’s important to have some idea about what it will cost dad, mom or your husband to get the care they need.” Only some 5 percent of adults have long-term care insurance to help pay for these services. Some policies can cost $8,000 a year.

The National Association for Professional Geriatric Care Managers recommends families discuss long-term care options early on, before a medical emergency.

“Advance care planning is a dynamic process that evolves over time as a person’s health goes from well, to ill, to ultimately terminal,” LMM co-founder Mary F. Mulcahy, M.D., wrote for The Huffington Post. “Medical advances have led to few cures of illness, have prolonged the experience of living with chronic illness and have prolonged the process of dying.”

In 2000 there were more than 35 million Americans 65 and older. By 2030, there will be 72 million. According to the Georgetown University Public Policy Institute, almost 10 million seniors currently rely on others for daily care.

Learn more from the Life Matters Media Newswire:

Vermont Statehouse votes “Death with Dignity”

Dying at home may be more difficult than expected

Some doctors still believe in psychedelic drugs

Dying at home may be more difficult than expected

Extensive planning is necessary for those determined to help their loved ones die peacefully at home, health care reporter Susan Seliger writes for The New York Times’ blog on aging. Most Americans say they want to die say “at home” when asked,  but both the patient and caregiver’s well being must be considered.

Investing in the right equipment and preparing documents may overwhelm some caregivers, and although professional help is available, each patient’s circumstances are different.  Seliger has prepared a list of 12 tips to help them fulfill their final wishes.

Perhaps the most important consideration is making room for the bed. “A lot of people put the patient in a family room where there is more space, or the dining room if it’s closer to a bathroom,” said Dr. Stacie K. Levine, a geriatrician and palliative care physician at the University of Chicago. She also recommends putting the bed on the first floor of the home to prevent strenuous movements.

The pros and cons of using a hospital bed, Seliger says, should be carefully considered due to the emotional impact that sleeping apart from a spouse can bring. She advises patients with dementia or  cancer who are not that mobile to choose a bed with an air compression mattress in order to to prevent bedsores.

Other suggestions are simple comfort adjustments, such as cushioning the patient’s favorite chair or buying earphones for the hearing impaired. Spring pressure adjustable curtains provide privacy.

Caregivers may also make use of hospice during the last stages of care. “A good hospice team not only helps the caregiver figure out a plan for care but arranges for Medicare approval and payment,” Seliger writes.

“The larger the hospice, usually the more services for the patient and caregiver,” said Dr. R. Sean Morrison, director of the National Palliative Care Research Center at the Mount Sinai School of Medicine. ”Ask for their daily patient census – several hundred patients per day is a good size.”

“What I see that prevents people from being able to stay at home [to die] is not their medical needs but the needs of their caregiver — can the caregiver really help, are there resources to help, or is that person going to be overwhelmed?” Morrison told Seliger.

“Respite care” for the caregiver may help with overwhelming stress. Respite care pays for up to five days of patient care in a nearby medical facility so the caregiver can take a break or even go on a vacation, said Lori Mulligan, senior director of development marketing and community services at Gilchrist Hospice.

Still, hospice care remains underutilized. As LMM previously reported, 36 percent of hospice patients die or are discharged within seven days of treatment.  Many others suffer more than they need to due to hospice enrollment policies. Hospice is most often used when curative treatment is no longer effective, and a terminal patient is expected to live about six months or less.

Despite the work, home deaths may be less traumatic than hospital deaths, according to a 2010 study published in the Journal of Clinical Oncology. Some 300 adults with terminal cancer and the same number of caregivers were studied. Among the caregivers, those whose loved ones did not die at home were about five times more likely to have post-traumatic stress disorder after six months than those whose loved ones died at home.

Learn more about dying at home from WebMD.

Learn more from the Life Matters Media Newswire:

Some doctors still believe in psychedelic drugs

Organ transplants: Who should receive them?

The Breakers offers advice for caring for elderly parents

A panel of health care and financial experts provided end of life planning advice to a packed room of seniors at The Breakers at Edgewater Beach Wednesday. The event served adult children caring for aging parents and seniors beginning to make end of life plans.

Dr. Leslie K. Eldridge, the executive director of the senior living facility, hosted the event and questioned the panel, which included Julie Fohrman from North Shore Geriatric Care Management and Kathy Sprau of Sprau Advocate Group.

Most questions pertained to changes the Affordable Care Act will usher in during 2014 and Medicare benefits. Eldridge acknowledged that she hears a story of someone working in crisis mode every day due to lack of planning and understanding of current policies.

“This is a topic that is on everyone’s mind these days,” said Sprau. ”There are so many questions and I think it is incredibly difficult to find information. You have the Internet and I don’t know if people know to go there.”

The audience was clearly engaged and would have asked questions for hours if allowed. The Breakers is planning another event in the coming months.

Victor Schwartz, 86, said he thought the event was very informative. “People always have these questions about how they protect their grandmother, their mother or someone that they have very close ties with.”

Learn more from the Life Matters Media Newswire:

National Institute of Medicine recommends improving end of life care

Life Matters Media featured in The DePaulia