Tagged: Dementia

Preparing for the dementia tsunami, a TEDMED discussion

TEDMED

As millions of aging Americans face cognitive decline, waiting for a cure to dementia is not an adequate plan for the future. So, TEDMED facilitated a live discussion about some possible solutions to the dementia epidemic with health care experts this week, as part of its Great Challenges series.

By 2020, there will be 43 million Americans 65 and older, 15 million 85 and older- double the numbers of 1980. The costs of dementia-related care will more than double by 2040, according to new findings published in The New England Journal of Medicine.

One of the most important solutions will be training all health care professionals about the issues of the aging population, said Dr. Sharon Brangman, a professor of medicine and division chief of geriatric medicine at SUNY Upstate Medical University. ”The fastest growing segment of our population are those people 85 and older, where the biggest risk for Alzheimer’s disease is.”

Echoing Brangman’s ideas about educating doctors and pharmacists was Dr. Guy S. Eakin, vice president of scientific affairs at the BrightFocus Foundation.

“The scale of the problem is huge. Right now, less than 1 percent of our nurses, our physicians assistants, and our pharmacists are certified in geriatrics, but 26 percent of their patient visits are from geriatric populations,” Eaken said. “That’s a huge discrepancy and training programs are necessary.”

The discussion was not intended to formulate concrete solutions, but provoke thoughts about possible remedies to address cognitive disease and the barriers to achieving them. For example, George Vradenburg, the chairman and co-founder of the USAgainstAlzheimer’s Network, noted the lack of funding available for research.

“Today we spend about $6 billion on cancer research, $3 billion on HIV and AIDS research, and less than $500 million a year on Alzheimer’s and dementia research,” Vradenburg said, while acknowledging concern about the sequester’s impact on medical grants through the National Institutes of Health. “The cost problem is an enormous one in this country.”

How can individuals help lower their chances of getting dementia? Brangman suggested exercise- even just walking to the mall from farther parking spots. Vradenburg said there may be a relation between cardiovascular disease and cognitive decline. “Being healthy gives you greater resistance to disease, but it doesn’t stop the disease,” he said.

Still, despite the lack of funding and volunteers in the U.S. for dementia research, “there really is no system doing it better,” Brangman said. “I really think the United States is the leader, we see a demographic shift in the whole world, where there are fewer young people.”

Learn more from the Life Matters Media Newswire:

Dementia more costly than cancer, will become more common

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

“Death denying” culture unfortunate result of medical innovation, says physician on Healthcare Decisions Day

Hospice remains a last resort, despite increase in deaths

Image: AMIDA Hospice Care Inc.
Image: AMIDA Hospice Care Inc.

Although it seems more Americans are choosing to die in hospice instead of spending their last days in intensive care units, new findings published in the Journal of the American Medical Association show hospice is often a last resort, only after aggressive treatments fail.

Researchers studied more than 800,000  fee-for-service Medicare beneficiaries who died in 2000, 2005 and 2009. They were at least 66-years-old and died of cancer, dementia or chronic obstructive pulmonary disease. Findings show more seniors are dying in hospice, but the rate of ICU use in the last month of life is also higher. In 2009, some 30 percent of the decedents experienced the ICU in the last months of life. Some 12 percent had three or more hospitalizations in their last 90 days of life.

Although hospice use did increase from 22 percent in 2000 to 42 percent in 2009, about 30 percent used a hospice for three days or less.

“We are not getting the right care to the right people,” study author Joan Teno told Politico. “And if we want to improve care, we’ve got to change the incentives — and publicly report the quality of care.” Teno is a health policy expert at Brown University and a practicing physician at Home and Hospice Care of Rhode Island.

Patients are moving from their hospital bed to the ICU for aggressive treatments, and they then move to a hospice to die. Nearly one-half transitioned to hospice in the last two weeks of life. Teno connects these short-term stays to the growing pattern of greater use of intensive services at the end of life. Hospice becomes an “add on” that does not reduce hospital resources.

Moving across care settings can increase stress on the patient and disrupt pain medications. “This is extremely burdensome to family members watching their dying loved ones,” Teno said.

Learn more from the Life Matters Media Newswire:

Costs and benefits of end of life treatment: A TEDMED discussion

The lack of advance care planning persists

TEDMED takes on caregiving

The stress and strife many caregivers face was the topic of  TEDMED’s latest Great Challenge series. The streaming video featured health care professionals who pondered what should be done to manage end of life care options and address caregiver needs.

There are 44 million full and part-time caregivers in the U.S. responding to an aging baby boomer population that the health care system isn’t equipped to handle. Costs continue to rise, and in 2010, Medicare paid $55 billion for doctor and hospital bills during the last two months of patients’ lives.

“We all know what the issues we’re dealing with are: the aging population, the health care system not being in a position to take care of everyone, people getting busier and living further away from other family members and a real need for better coordination of care in the marketplace.” said Alan Blaustein, the founder of CarePlanners, an organization which provides educational support to members. “The real issue at hand is that there’s nobody in the system who’s in any position to properly care-give or coordinate care for any member of your family,” so the responsibilities rely on family.

Education was a common theme throughout the discussion directed at both medical students and family caregivers. Blaustein insists students learn about caregiving, even though hospital settings don’t allow time for much talk with those managing the care.

Cheri Lattimer, director of the National Transitions of Care Coalition, offered practical wisdom for those just beginning the implementation of educational support programs for those caring for family.

Lattimer proposed that health professionals talk with “health literacy” to those looking for education and just starting to care for those with dementia. “We are talking in the health literacy that patients and consumers can understand. As providers of care we often go into medical terminology which can be difficult to understand.”

She also recommends educational programs with multiple individuals who are dealing with similar struggles- so they can talk to each other.

More and more young people are now taking on caregiving roles. “There are far more children who provide caregiving than we know. It has an impact on them, their schoolwork and their own emotional situations,” said Suzanne Geffen Mintz, the co-founder of the National Family Caregivers Association.

“Other countries have recognized this problem and developed youth-centered programs that allows kids to be kids. There is vast experience elsewhere that could be adapted here,” said Carol Levine, director of the Families and Health Care Project. Young adults, 18 to 25-years-old, are also overlooked and increasingly involved in family caregiving, she said. There is diversity in family caregiving, and varied caregivers have varied needs.

Learn more from the Life Matters Media Newswire:

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Feeding tubes: Families struggle with the decision

Source: Brown University, Joan Teno

Many families caring for seniors with advanced neurological disease face this dilemma: prolong their loved one’s life by artificial means via a feeding tube or stop feeding them altogether. Lisa Krieger’s new feature for Mercury News focuses on the billion-dollar feeding tube business and why some families regret their decision to opt for artificial nutrition.

One-third of nursing home residents suffering from dementia receive tube feedings, contributing to the $1.64 billion industry. However, some families and physicians insist the value of feeding tubes is overrated, since they provide little medical benefit and increase pain for those suffering from progressive neurological disease.

Source: mercurynews.com

“The number of nursing home residents with advanced dementia who get feeding tubes each year varies widely across states,” Krieger reports. The only comprehensive study on the matter found the average rate of use nationwide was 54 per 1,000 people.

Racial minorities are also more likely to opt for artificial tubes than whites. Life Matters Media previously reported that blacks are twice as likely than others to choose aggressive end of life treatments.

As medical costs continue to rise and the baby boomer population ages, views on artificial nutrition may be changing. “Decades after the tube achieved widespread use for people with irreversible dementia, some families are beginning to say no to them, as emerging research shows that artificial feeding prolongs, complicates and isolates dying,” Krieger writes.

For example, a 1999 study by Dr. Thomas Finucane of Johns Hopkins Medical Center found no evidence that feeding tubes prolong the lives of demented nursing home patients. They also didn’t prevent pneumonia or improve comfort.

Finucane’s analysis asserts: “We found no data to suggest that tube feeding improves any of these clinically important outcomes and some data to suggest that it does not… risks are substantial. The widespread practice of tube feeding should be carefully reconsidered…”

Most families, however, are accustomed to caring for their sick by feeding them, a reason why the decision to opt for or against artificial nutrition is especially emotional. “Food is how we comfort those we love; when all other forms of communication have vanished, feeding remains a final act of devotion,” Krieger writes.

Sometimes a terminally ill individual may not feel pain when a feeding tube is first inserted in the stomach. As the illness progresses and pain begins to get more intense, removing the tube becomes a moral debate. This quandary often comes as another surprise for families.

“It is amazing how long you can keep someone alive,” said Dr. Leslie Foote, medical director of Windsor Gardens Rehabilitation Center in California. “But we sure aren’t doing them any great favors.”

Despite some change in public opinion, families may not have the choice to reject feeding tubes. The fallout from the controversial 2005 Terri Schiavo case led the Catholic Church to order doctors at its hospitals to ignore patients’ advanced directives- even if they do not want artificial feeding. Catholic hospitals may mandate artificial nourishment.

In 2009, the U.S. Conference of Catholic Bishops issued the directive to more than 1,000 Catholic hospitals and nursing homes, as well as to all Catholic doctors.

“People with end stage dementia still possess human dignity. And that dignity must be respected,” said Vice- President of Corporate Ethics at Catholic Daughters of Charity Health System Gerald Coleman. Krieger insists that tube feeding constitutes ordinary care at Catholic hospitals.

Learn more about feeding tubes at WebMD.

Learn more from the Life Matters Media Newswire:

“The Quality of Life”: The end of life played out on stage

Childless baby boomers plan for end of life care

End of life costing more than total assets of seniors

A quarter of Medicare recipients spend more than the total value of their assets on end of life care, according to a new study published by the Mount Sinai School of Medicine.

Deductibles, co-payments and home care are not covered by Medicare. “Prior to this study there was not a lot of data on the extent of out-of-pocket spending,” said study author Amy S. Kelley. “I think a lot of people will be surprised by how high these out-of-pocket costs are in the last years of life.”

The Washington Post / Wonkblog

The study relied on data from 2002-2008, which was collected from the Health and Retirement Study and supported by the National Institute on Aging and the Social Security Administration. Researchers used data on 26,000 Americans over the age of 50 and 3,209 Medicare recipients during their last five years of life.

The study found that 43% of Medicare recipients spend more than their total assets without the value of their home included. More than 75% of respondents paid at least $10,000 in out-of-pocket expenses for end of life care.

Patients suffering from dementia or mental illness often pay more for their care, because special living arrangements are needed. The amount of spending varied by diagnosis. Science Codex reports: ”Those with dementia or Alzheimer’s disease spent the most for health care, averaging $66,155, or more than twice that of patients with gastrointestinal disease or cancer, who spent an average of $31,069.”

The Washington Post / Wonkblog

The study concluded that the elderly patients facing end of life issues are at serious financial risk from health care related expenses. “A new generation of widows or widowers could face a sharply diminished financial future as they confront their recently-depleted nest egg following the illness and death of a spouse,” Kelley is quoted in The Washington Post.

Learn more about health care from the Life Matters Media Newswire.

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Mich. couples to lose health coverage

Men help women with Alzheimer’s

With women at higher risk of Alzheimer’s or dementia, men are stepping up and taking care. USA Today’s feature on John and Mary Ann Becklenberg is a heartwarming example of resourcefulness. Since Mary Ann was diagnosed with Alzheimer’s six years ago, her husband John has devoted his life to helping her. The couple, both 68, has been married 42 years. Alzheimer’s is irreversible and worsens with time, usually making victims forget family, friends and daily functions.

Today’s Janice Lloyd writes: “Women are still more likely to be caregivers, but the number of men caring for loved ones with Alzheimer’s or dementia has soared from 19% to 40% in the past 15 years, according to the Alzheimer’s Association. Among people over age 65 with the disease, about two-thirds are women (3.4 million), one-third men (1.8 million).”

It is not easy for anyone to become a full-time caregiver for a patient suffering from mental disease, especially a man. According to Beth Kallmyer, spokeswoman for the Alzheimer’s Association, “One of the problems with Alzheimer’s is it can go on for such a long time,” she says in the feature. “While everyone deals with it in their own way, male caregivers can sometimes find it harder to ask for help than women.”

“Males try to fix stuff,” says John. “We get out in front of ourselves a little bit too much. But by doing this instead, I ease her anxiety. I think it’s helped her in the long run. It’s also helped us both keep our integrity, and that’s important in a relationship.”

Gail Hunt, president of the National Alliance for Caregiving, is quoted in the feature: “Unlike other illnesses, like cancer, with Alzheimer’s in the later stages, the family member doesn’t know who you are. And that’s really devastating to families.”

Dementia patients given say in death

The Telegraph is reporting in the U.K. that “People in the early stages of dementia are to be given a right to have a say in how and where they want to die under guidelines for medical staff and social workers.”

“New draft guidelines drawn up by the NHS watchdog Nice will require local authorities and health trusts to give people diagnosed with dementia an opportunity to discuss options for care at the end of their life as early as possible while they still have the capacity,” writes John Bingham. NICE stands for National Institute for Health and Clinical Excellence.

According to the U.K.’s Public Service, “NICE said that people living with dementia should have a care and support plan based on their needs and they should be helped to access services that help maintain their physical and mental wellbeing – but based on individual interest and choice.”