Medicare to Launch New Caregiver Website

The Centers for Medicare & Medicaid will launch a new website for caregivers on Wednesday, September 18, called Ask Medicare. You can sign up here for a live webcast at 12:00pm ET to learn more. (Thanks to the Minding Your Elders blog for sharing information about the new site.)

Discussing Racial and Ethnic Differences in Health Care

A few items appeared this week touching on racial and ethnic differences in health care. We are focused on diversity at HFA, as we prepare for our 2009 teleconference on Diversity and End-of-Life Care.

First, the New Health Dialog Blog discussed a study that appeared in the September 10 issue of the Journal of the American Medical Association, "Student Body Racial and Ethnic Composition and Diversity-Related Outcomes in US Medical Schools". The authors conclude "attending medical schools with high levels of racial and ethnic diversity may better prepare white medical students to care for minority patients." Analyzing over 20,000 web-based surveys from students graduated from 118 medical schools, the authors commented:

. . . white students attending more racially diverse medical schools rated themselves as better prepared than students at less diverse schools to care for racial and ethnic minority patients and had stronger attitudes about inadequate access to health care. . . . The associations of student body diversity appeared to be mediated by more positive interaction and perspective sharing among individuals from different backgrounds within medical schools. The association of student body diversity with white students' self-rated cultural competence was only observed when students perceived a more positive climate for interracial interaction and exchange of diverse perspectives.

Second, Pallimed reviewed a recent study from the Journal of Clinical Oncology on the racial and ethnic differences in advance care planning.

They found that Black and Hispanic patients were less likely to have an advance directive than white patients (and in this case much less likely: 80% vs 50%), were more religious, and were more likely to endorse life-prolonging treatment wishes even if had only a few days to live. Dishearteningly, only 30% of patients had had any sort of discussion with their physicians regarding end of life care - this finding did not differ between groups. Fewer Black and Hispanic patients acknowledged they were terminally ill compared to white patients, however such acknowledgment was associated with increased advance care planning in all groups. The really interesting finding is that differences in advance care planning persisted even after adjusting for demographic factors (age, education level, etc.), terminal illness awareness, religiosity, and preference for life-prolonging therapy when dying. Suggesting, that is, that these differences are either deeply cultural (and thus not as impacted by demographics, illness understanding, etc.) and/or related to how/the frequency with which clinicians bring up advance care planning with patients from different ethnic groups.

And last, the Oregon Center for Applied Science (ORCAS) is conducting surveys for a study funded by the National Institutes of Health. It is seeking people who identify as a racial or ethnic minority to receive $275 for using a new Family Caregiving Support program and completing four online surveys.

Eligible participants must:

* Care for an aging relative or friend with advanced illness or in need of assistance with daily tasks like bathing, eating, dressing, walking, etc.

* Have an email address and access to a computer with a high-speed Internet connection.

* Read and understand English.

Only one person per household may participate in this study.

Visit the survey site here.

Medicare Announces Webcast for Caregivers

The Centers for Medicare & Medicaid (CMS) announced a webcast on "Connecting Caregivers to Medicare Resources." The webcast will air next Thursday, September 18, 2008 from 12–1pm ET. Caregivers will be able to:

• Learn about new online resources for caregivers


• Post questions to CMS Acting Administrator Kerry Weems and a panel of experts online


• Sign up for the Ask Medicare bi–monthly e–newsletter

For more information or to register, see this site.

Round-Up: Preventing Falls, Expressing Condolences, Respite Care, and More to Come

I’m still catching from a lovely August vacation, but wanting to share some articles that appeared in The New York Times while I was gone. Here Ohn Mar talks about a study examining ways to reduce falls among the elderly.

Falls among the elderly, a common source of injuries, have largely been considered inevitable. But a recent large-scale study shows that a combination of adjusting treatment, assessing risk and educating patients can substantially reduce serious falls.

The study, by Dr. Mary E. Tinetti and her colleagues at the Yale School of Medicine, compared two similar regions of Connecticut. For four years in the experimental region, the researchers asked clinicians to assess their patients’ risk of falls and to consider medication reduction and other prevention measures like strength training, vision adjustment and blood pressure treatment. The rate of serious falls by the elderly in that region was 11 percent less than that in the region that followed normal care.

That lower rate of falls translated to 1,800 fewer emergency visits by the elderly, the researchers said, saving more than $21 million in health care costs. The study was published July 17 in The New England Journal of Medicine.

In this essay, the vice chairman of medicine at Memorial Sloan-Kettering Cancer Center, Kent Sepkowitz, M.D., writes about doctors not expressing condolences.

Not long ago, soon after we put our pet dog to sleep, I received a handwritten note from our veterinarian expressing her condolences. The letter was not brief — she described my children’s fondness for little Rudy and how caring they were as his condition worsened. It was thoughtful and personalized, not something she had simply dashed off.

In contrast, during my 25 years of caring for humans I have written only a handful of similar notes to families after a loved one’s death.

Here, John Leland writes about respite care and the reluctance of caregivers to use the service for their ailing relatives.

In an aging population, nine million people take care of someone with Alzheimer’s or another form of dementia, and for many it is a responsibility without a break.

But as health professionals and the federal government have recognized the strain on these family members — including higher rates of depression, hypertension, diabetes, sleep disorder, heart disease and death — a growing number of facilities now offer short-term respite stays. In its simplest form, respite might be a home aide a few hours a week or use of an adult day care service. To caregivers at the end of their rope, real respite means a short time away — what for anyone else would be called a vacation.

Most caregivers do not take respite vacations because they see them as an admission of failure, or they worry that something will happen while they are away. A paradox of caring for an elderly relative is that the burden is so big, many feel they cannot share it.

Paula Spencer, a senior editor Caring.com, wrote about NYT’s respite care piece on their Caring Currents blog.

Every caregiver should know the key points:

1. Respite can save your health and your marriage.
2. Overnight options include in-home care and short-stay arrangements in nursing homes, assisted-living facilities, and "camps," such as one run by the Family Caregiver Alliance.
3. Using vacation respite isn't bad for the loved one with dementia.
4. Taking a vacation isn't a sign that you're a lousy caregiver.

That last point probably belongs first, and in all caps. There's such a pervasive misconception, deep in the psyche, that it isn't "right" to leave a loved one who needs care while you go off on holiday. "Most caregivers do not take respite vacations because they see them as an admission of failure or they worry something will happen while they are away," says the Times piece.

Examining Caregiving Among Florida's Minority Populations

An article in Washington's The Olympian newspaper discusses a two-year project run by the University of Miami's Center on Aging to evaluate the strain of caregiving on 200 minority caregivers in southern Florida. The project will feature an emphasis on using technology to connect caregivers, using video phones.

"People don't plan on becoming caregivers," said Dr. Sara Czaja, co-director of the center and principal investigator on the project. "It's something that just happens to them. It's not one size fits all. Culturally, we have different ideas about family, about caregiving - maybe technology can play a big role."

MAKING A CONNECTION

Part of the program involves connecting caregivers to others through video phones installed in their home. Through their video monitors, they can reach out to other caregivers, social workers or medical experts and watch pre-recorded videos about caregiving and Alzheimer's.

Profiles of Five Women Caregivers

This piece from the Rockford Woman (IL) magazine features the profiles of five women whose professional careers or personal lives involve caring for the elderly. Debra Adkins is the campus administrator for a facility that operates buildings ranging from independent living to a skilled nursing home on one campus. Teresa Colvin is a caregiver specialist for the Northwestern Illinois Area Agency on Aging. Beverly Bosselman is a certified hospice palliative care nursing assistant. Gloria Dawson is an author who wrote a book about caring for her mother and Shirley G. Sievers is a geriatric consultant and care manager.

Broken Bones Aren't the Only Danger When an Elderly Person Falls

Anne Marie Valinoti, M.D., an internist in northern New Jersey, shared a case earlier this week in the New York Times. An 88-year-old woman had fallen and was alone on the floor for 15 hours when the family found her.

Although her family had called her while she was unable to rise, but she did not say she needed help because she didn't want to trouble them. This put her at risk for an extensive muscle injury. It highlights the need not only to try to prevent falls, but to talk with elderly relatives about the need to ask for help if they do fall.

Round-Up: Physicians Handling End-of-Life, Caregiving Talks, Photo Essays, Scholarships and Awards

I have so much crowding my inbox this will be a big list:

• Most weeks the New York Times Health Section features cases from different doctors. This one from Dr. Jessica L. Israel, chief of geriatrics and palliative medicine at Monmouth Medical Center, urges doctors to slow down to contemplate the moment, whether its to witness a patient's death, or to receive a patient's appreciation.
  

  It’s Monday morning and I meet my new medical student, Nelson, on the hospice unit. I am there to sign a death certificate for a man who died the night before. Nelson is flipping through the patient’s chart, and he asks me, “What are we going to do for this patient today?”
  
  I wonder if he’s kidding, and I say: “Nothing. He’s dead.” Later, recalling this conversation, I still cannot believe I said it so matter-of-factly.
  
  Nelson is still holding the chart and I think I see his hands shake.
  
  “Hey, are you O.K.?” I ask. “You do know what you signed up for, don’t you? It is a palliative-care and hospice elective. People are going to die every day.”
  
  “I know, I know,” he says. “I’ve just never been near anyone who has died before.” Then he says, “Wow, it’s really a big deal.” And he sits down — because he needs to, I think; he needs to respect the moment.
  
  In this moment I learn something from Nelson, a lesson I thought I already knew. I learn to slow down, to feel the gravity of the moment, the power of time and the depth of this important work. Nelson is right. It is a big deal.

• On a similar vein, the Washington Post and Newsweek's On Faith column featured an essay from Ismael Gama, Associate Vice President of Spiritual Care and Mission Integration for Adventist HealthCare. Gama speaks about the need of all members of a health care team to understand the whole patient.
  

  In the 1920s, Anton Boisen, a pioneer in hospital chaplaincy and CPE [clinical pastoral education] , was the first to coin the term living human document in reference to the understanding of a patient’s theological needs. The living human document has since evolved to become a catch-all term in regards to understanding the theological, psychological and social needs of patients.
  
  . . .
  
  Our ability to apply this knowledge in health care, however, is largely dependent on our ability to get to the heart of an individual’s story. While CPE students are already engaged in this discussion as part of their training, we need to engage all members of the health care team in this dialogue because there are lessons in the living human document that can improve the delivery of quality, compassionate care.

• Another New York Times article that got us talking is this one about the rise in medical procedures being performed on the very old, in this case a pacemaker and defibrillator implanted in a 99 year old woman.
  

  Dr. David Goodman, a co-author of the Dartmouth Atlas of Health Care, which has studied the last two years of life, said there is much research suggesting that most aggressive treatment of late-stage chronic diseases does not actually prolong life and can actually decrease its quality. Of Mrs. Homer, Dr. Goodman said, “the odds are that she’s really an amazing exception.”
  
  “The question is not a relatively healthy, smart, sensible 99-year-old getting a life-prolonging procedure, one that prolongs the quality of life,” Dr. Goodman added. “The question becomes the 82-year-old with dementia who has cancer or congestive heart failure.”
  
  . . .
  
  But Dr. Tom Perls, founding director of the New England Centenarian Study at Boston University Medical Center, said that people who reach 100 “have demonstrated a survival prowess.”
  
  “It’s much more the case of the older you get, the healthier you’ve been,” Dr. Perls said. “In my experience, when they’re completely cognitively intact, you cannot in any way or form predict their mortality.”

• Look at Philip Toledano’s photo essay, Days With My Father. At 98, his father suffers from dementia and other health problems. Toledano's photographs chronicle his caregiving journey in a powerful way. (Thanks to The Future of Aging Blog for sharing.)

• Listen to Carol Levine on NPR's Fresh Air radio program. Levine, a home healthcare advocate, cared for her husband for 17 years, who was seriously injured in a car accident in 1990, until he died in 2007. Levine also served on the panel for HFA's 2001 teleconference on Caregiving and Loss.

• Watch this interview of Linda Edmondson, co-chair of the Attorney General's Task Force to Improve End of Life Care in Oklahoma and a member of the Governor's Hospice Advisory Board.

• View the winners of the National Family Caregiving Awards, sponsored by the National Alliance for Caregiving with support from MetLife Foundation.

• There's a caregiving scholarship available through the Rosalynn Carter Institute for Caregiving. The Mattie J. T. Stepanek Caregiving Scholarship provides financial assistance to family, professional, or paraprofessional caregivers of any age who are seeking training or education in specific skills, procedures and strategies that lead to more effective care at the same time that they serve to protect the health and well-being of the caregiver. Four $2,000 scholarships will be awarded. Deadline for application is September 15, 2008.

Participants Needed For Caregiver Support Research Study

The Caregiver Support research study seeks participants to help test an online program designed to help caregivers provide assistance to an aging loved one. Participants can receive up to $275 for filling out four online surveys and trying out a new caregiver support website before August 18, 2008.

To qualify, participants must be providing caregiving support to an aging loved one who needs assistance with at least one activity of daily living (i.e. eating, bathing, etc.) and participants must have an email address and a computer with a high-speed Internet connection.

This study is being conducted by the Oregon Center for Applied Science, Inc. by a grant from the National Institute on Aging.

Strain of Caregiving Considerable When Caregiver is Also a Single Parent

This article from The Journal News (NY) profiles one single mother's struggle to provide care for her mother.

Catherine Wilson sits down to work as a bookkeeper every night at 9, after her 80-year-old mother has settled into bed. She does her grocery shopping after midnight, no longer surprised to see others in the aisles at 2 a.m.

A 50-year-old mother of two teenagers, Wilson says she can instantly spot her fellow "caregivers," as they are known in the social-service pamphlets. They are struggling to meet the needs of an elder at home - medical appointments, prescriptions, and mental confusion, in her mother's case - while raising kids and trying to hold down a job.

"I've had unbelievable conversations in supermarkets," she said. "We have children, we have households, we have work responsibilities. We're still paying mortgages, and we're faced with a situation where we have to quit work."

The article features video of Wilson and her mother that illustrates the story. Thanks to Aging Parents Authority for sharing.

Idaho Improves Community and Home Based Care for State's Residents

Nice post from Joanne Kenen at The New Health Dialog Blog about Idaho's innovation in home based and community care.

Even Leslie Clement, Idaho's Medicaid Administrator, admitted that Idaho isn't usually regarded as a hotbed of social innovation, but the AARP was impressed enough with the state's achievements on keeping people out of nursing homes to make Clement one of the featured speakers at a recent luncheon and discussion on long-term care entitled "A Balancing Act: State Long-Term Care Reform." With good reason.

Most of us don't' want to end up in nursing homes. Too often, we don't have an alternative. Many states, Idaho among them, have been exploring ways to provide more home and community-based care. It's cheaper. And people prefer it.

Does Assisted Living Include Caregiving?

This post from caregiverslist.com discusses the variation in services offered by assisted living facilities. If you are researchers assisted living for a family member, you will want to ask about what eldercare services are offered, whether nursing care is available and for what cost, and whether the center can provide continuity of care at the same location.

Finding the right Assisted Living Community presents a complicated task because of all these dynamics. In addition, another type of assisted living is called "continuing care" and available at Continuing Care Retirement Communities. These communities usually require a large initial deposit (some seniors sell their home and use the proceeds to pay for this deposit) but guarantee the senior will be able to remain in the community as their care needs may change. Usually condos or townhouses, apartments and nursing centers are all located on the campus and the senior may move between them, as needed.

Bringing Home Mom and Dad

Newsweek prints a weekly "My Turn" essay from a reader. The July 21 edition is from Anne Kennedy Rickover, who writes about the decision she and her parents made to have them move closer to her home as they began to have more difficulty managing their daily activities. She describes the decision to ask her parents to move to her hometown as similar to the decision to have a child, requiring planning for a life-altering event.

I hadn't been pregnant in 20 years, but this was planned just as my previous pregnancies had been. For no logical reason, I woke up one day and knew that it was correct; my entire being knew it was precisely the right time. Of course, the clarity was subtly infiltrated with uncertainties and fears as soon as the decision was made.

When I woke up that morning a little more than a year ago, I knew it was time to ask my parents to move closer to me. By closer, I mean 1,300 miles closer—all the way from suburban Philadelphia to Lincoln, Neb. The logistics, both geographically and culturally, were overwhelming. The distance between the East Coast and the Midwest had never seemed so vast.

Preliminary Long-Term Care Opinion Leader Survey Results

The Commonwealth Fund and Brown University conducted a survey of long-term care leaders. Over 1100 respondents, including consumer advocates, providers, public officials, and policy experts, completed the survey between September 2007 and March 2008. The research objectives were described as:

• Assess the views of long-term care opinion leaders with regard to the current state of long-term care in the United States, the attributes of an ideal long-term care system, and potential areas and strategies for reform;


• Identify areas of agreement and disagreement about the nature of the long-term care problem across opinion leader type;


• Compare the views of national, state, private sector and research based long-term care opinion leaders vis-à-vis the character of suggested strategies for reform;


• Learn about the networks of long-term care opinion leaders and how knowledge and views regarding important long-term care issues diffuse among them;


• Compare views of long-term care opinion leaders to those of other health care opinion leaders and the general public that have emerged from previous surveys.

Among the findings, eighty-five percent ranked the workplace as one of the top three challenges facing long-term care, followed by financing (66%) and achieving quality (60%). More ranked nursing homes as fair or poor (53%) than other service types, including hospices (6%). They favored adopting savings incentives and adding a long-term care benefit to Medicare. Few had faith in consumer report cards to help people make informed choices. Read more by downloading the top-level findings.

Round-Up: Travel Tips, Dementia Study, Hospice Music and the Perfect Conversation

Some articles, posts, and items of interest from around the web collected from the past couple weeks:

• The Caregiving Solutions blog offers tips about traveling with elders and the disabled. Preplanning is essential to the process and wellness coach Pamela Larsen Schroeder offers some good advice caregivers should think before their trip.


• From the Changing Aging blog - "HealthPartners’ research foundation and the Center for Spirituality and Healing at the University of Minnesota are recruiting participants through the summer for a study that will seek better means of stress management for people who are caregivers to a family member with dementia. To learn more or sign up, contact Dana McGree at 952-967-5031 or dana.a.mcgree@healthpartners.com."
  


• The Boston Globe offers a review of a new release of 'hospice music':
  

  The title of classical guitarist Marcia Feldman's new CD, released June 17, is "Between the Worlds." Perhaps no idea could better sum up the unique realm that Feldman's music inhabits. She is a hospice musician - a performer who plays tunes to soothe the dying. The worlds she refers to in the CD's title are those of life and death, and her music is designed specifically to ease the transition from one to the other.
  
  It's an unusual niche, to be sure, but one in which the Dedham resident has long felt comfortable. Trained in classical guitar and jazz vocals at Berklee College of Music, Feldman first began thinking about the connection between death and music when she lost her father 20 years ago. "His situation did not involve hospice care; he died suddenly," she said. "But something about the process of grieving for him made me think increasingly about the role music plays at our most troubling times."



• This blog features posts about two family members diagnosed with cancer, the mother and brother of the writer. This post describes the conversation between the brother and his oncologist.
  

  After discussing Craig’s report, Dr. F. gently began asking Craig questions about his quality of life, including how he feels compared to six weeks ago; if he’s happy with the chemo results thus far; and if he feels satisfied with his quality of life. He asked these calmly, and in a way that shaded his own opinion from that of Craig’s. Craig answered every question, with each response growing labored from sheer exhaustion. He said that he felt more tired than six weeks ago, when he felt he was more on the mend. He seems most distressed about his fatigue, which has prevented him from doing the things he loves, like reading, writing, and playing music. He said he can muster energy to do short activities, but even those are difficult; talking has become another short activity. Still, he feels he’s satisfied with his life (so far) and would like to continue. If I know my brother, he won’t be the one to say stop.
  
  It broke my heart to hear him speak about his life, a life that was so vibrant and so full of promise just six months earlier. That he’s had to discuss his own treatment, and consider his own mortality less than one week after burying Mom seems particularly cruel. But there’s never a good time for such a discussion, and Dr. F. did it perfectly. He ended the discussion by saying that if C were to say that he no longer wanted to continue with the medicine, he would view it as a reasonable statement. He also added that he sees a lot of cancer patients, and that C seems to be fighting hard to be where he is. He noted that he had hoped C would be in a better position symptomatically, and though there’s still a chance he may turn the corner, Sorafenib hasn’t really helped C in terms of enhancing his energy.

New Blog on Caring for Aging Parents

Jane Gross of the New York Times has started a new blog, The New Old Age, that deals with the challenges of caring for your aging parents. In the blog’s second post, “Our Parents, Ourselves,” Gross discusses the difficulties she and her brother encountered when their mother began to need more assistance. She has struck a cord with readers, who have already contributed hundreds of comments. Reading the comments is as eye-opening as reading her post, as people share their stories of struggling to provide care for their aging parents.

Unfortunately, Gross' experience is not unusual. HFA is ready to help answer any consumer-related questions you have, or we will get you to the place that can help.

Communication Tips for Caregivers

RNCentral offers this list of 50 communication tips and techniques, for professional nurses as well as for family caregivers. The tips are grouped by areas, including memory loss, speaking, attention, nonverbal, behavior, and with others. Each item links to more detailed information from a variety of websites.

Emergency Planning for Hospices and Eldercare Agencies

The recent floods in the Midwest have highlighted the need for hospices and other agencies that provide care to the elderly to have an emergency plan in place in case of a natural disaster. This post from Caregiverlist.com provides a checklist for those providing care in an elderly person's home. Pallimed conducted an interview with David Wensel, DO, hospice & palliative medicine physician for Hospice of North Iowa. Dr. Wensel discussed the challenges of providing care to their hospice patients after the flooding.

Pallimed: What are the important lessons learned from the flooding to share with other hospice agencies as they look at their own disaster planning?

Dr. Wensel: The greatest lesson learned is to plan for the worse case scenario. As a hospice think about if you lost half your staff, some of your patients had to be evacuated, and you had no safe water. You can never plan for every possible problem that might come up, but it would be very helpful to talk through different disaster plans with your staff. You never realize how wonderful it is to wash your hands, brush your teeth or take a bath until you can't. I had never thought about all the things we do to care for patents that require water.

Helpful Way to Think About Caregiving: Six Stages

I came across an online radio broadcast about the Six Stages of Caregiving that aired earlier today (Thursday). The stages are described on the Caregiving.com website, and were developed by Denise M. Brown, who runs The Center for Family Caregivers in Park Ridge, Ill. The site is a little difficult to navigate but stages of caregiving she describes: expectant, freshman, entrenched, pragmatic, transitioning, and godspeed - can be useful to those starting on the caregiving journey and offers some excellent suggestions for handling your changing role. The radio broadcast dealt with the first three stages and the next three stages will air next week.

Watch the Health Implications of Caregiving Satellite Broadcast

Next Wednesday, June 25th, from 1-2:30pm ET, the U.S. Department of Health & Human Services and the Centers for Medicare & Medicaid will sponsor a satellite broadcast, Health Implications of Caregiving. Attendees will:

• Learn about the impact caregiving is having on your health.


• Learn simple tips to preserve your health while caring for a loved one.


• Hear about programs specifically developed to support you.

Learn more here.

Round-Up: Awards, New Caregiving Advice Column, MedPAC report and more

This week's collection of articles, posts, and items of interest from around the web:

• The Jefferson Awards, honoring contributions through public and community service , announced its 2008 winners, including the founder of a hospice in rural Mississippi.


• The Rosalynn Carter Institute for Caregiving is now taking nominations until August 15 for its 2008 Leadership in Caregiving Award.


• Judy Bachrach, journalist and contributing editor at Vanity Fair, had launched a new website on online advice column on dying well


• The Medicare Payment Advisory Commission (MedPAC), an independent Congressional agency, has released its June 2008 Report to Congress. There is a lot of information about the Medicare hospice benefit in the report. HFA will share highlights in a future post.

Caregiving Notes

Here's a round-up of some recent blog posts on caregiving.

• The Caregiving Solutions blog offered this post on mindfulness. Pamela Larsen Schroeder writes about how practicing mindfulness can be a powerful self-care strategy to alleviate caregiver stress.


• Sheryl Karas at the Spiritual Caregiving blog writes about the difficulties that can arise when a family member decides to provide in-home care for an elderly relative, in this case, a grandchild moving in with a grandparents.


• And last, an article by Brian Wallheimer, of the Journal & Courier (IN), discusses the challenges of so-called "sandwich" caregivers, including financial and emotional strains.
  

Depression and PTSD Seen in Caregivers

ScienceDaily reported on a study of caregivers of deceased lung transplant recipients. The study was reported at the American Thoracic Society's conference in Toronto. Researcer Cynthia Gries, M.D., M,Sc., reported that symptoms of depression and post-traumatic stress disorder (PTSD) among caregivers of deceased lung transplant patients are four-to-five times more prevalent than in the average population. The researchers had caregivers of lung transplant recipients at the University of Washington who had died in the last five years fill out three questionnaires.

"We found that caregivers reported that their loved one's symptoms were poorly controlled and that the quality of the dying and death process was worse than that of other populations. In addition, family members who perceived that their loved one had either a lower quality of dying and death or poorly controlled pain symptoms, were more likely to have symptoms consistent with PTSD. . ."

. . .

The study demonstrates that there is an urgent need for significant improvement in areas such as symptom management. Dr. Gries believes that having trained counselors to help family members with emotional needs, as well as financial issues, could reduce the stress on caregivers. "We hope that our findings will increase awareness among clinicians that caregivers experience a significant burden of symptoms and may need additional support," she concluded.

Role of Caregivers, Medical Homes, Dear Abby, and the Compassionate Friends

Here's another round-up of a few interesting items:

• From the caregiverunderground blog, a post about how family members often don't label themselves caregivers when providing support for a dying relative.

  To those of us helping our loved one through difficult times, a caregiver is someone you hire to help if don’t have the time or skills to care for your loved one. I remember early on my aunt said, “have you seen or read the caregiver book I got during Bill’s illness?” Why would I need to read such a book, I was her niece helping her because I had the time and I loved her. I was not her caregiver. It really did not hit me until about 6 months in that I realized, but never verbalized, that I was her primary caregiver.



• Friday's Dear Abby column included a letter offering advice to those visiting a terminally ill patient, that offers some good suggestions.


• This Boston Globe article discusses the evolving role of a medical home, and discusses pilot projects being tried.

  When the medical home was first conceived by pediatricians about four decades ago, doctors thought it would most help patients with complex or chronic problems. Tests in several practices nationwide found that these patients treated in medical homes more often got needed care promptly, hospitalization rates dropped and patient satisfaction rose.
  
  Still, the concept didn't gain much traction until the last four years, when organizations representing 333,000 doctors, including many of the nation's primary care physicians, endorsed the medical home for all patients.



• The Compassionate Friends, a national support group which assist families following the death of a child at any age, has an upcoming conference in Nashville on July 18-20.

Difficulty Finding Appropriate Care for Disabled Young Adults

What happens to disabled children when they age out the programs designed to care for them? As the New York Times reports, their parents and caregiving can be left scrambling to find an appropriate facility to offer continuing care. This Wednesday's article featured the story of Sam Stabiner, who suffered from a rare form of meningitis at age 15 and is now categorized as 'medically fragile.' Stabiner is one of about 8,000 people under 30 living in a U.S. nursing home population of 1.4 million. And nursing homes, oriented to care for an aging population, are ill-prepared to meet the needs of their younger residents, the Times reports.

Celebrating Death, Hospice Visits, and Alzheimer's

This post is a round-up of a few items of interest that address caregiving, death, and hospice from a personal perspective.

• TIME Magazine had an essay from Nancy Gibbs about celebrating the day of her father's death. The metaphor her husband used to explain his death to their daughter is wonderful.

  How is it that the one event we know with absolute certainty will occur is still one we improvise? Do we lower our voices, dress in black, save a lock of hair as the Victorians did and wove into jewelry? Do you let young children see a corpse--the very word suddenly cold and empty because his flesh and blood no longer matter, his meaning filling the space once his presence is gone? "Is that Grandpa?" our 4-year-old wondered. "No, honey," my husband told her. "He's not here anymore. That's just his body." She worked at this, how the arms that held her and the lap she sat in were no longer him. "You know how when we go to Florida, we leave our winter coats at home because we won't need them there? Well, he just left this behind because he doesn't need it anymore." And this appeared to make perfect sense to her, and she went to play, full of love and certainty, and we all took a walk in the watery light of late afternoon.

• A medical student at the University of Glasgow blogs about her visit to a hospice as part of her medical training.

  I spent Wednesday morning at a hospice on the south side of the Clyde.
  
  It may not be how most people would react, but afterwards, standing outside, I turned to my VS tutor and said, “This is going to sound weird, but it seemed like a really happy place.”

• The News-Times (Connecticut) carried a story about the strong love that remains in a 68-year marriage of a couple where the husband has Alzheimer's disease.

Grants Being Awards for Community College Caregiver Training Programs

The Caregiving Project for Older Americans, a project of International Longevity Center-USA and with funding from the Met-Life Foundation , will award up to twelve $25,000 grants to community colleges to establish new caregiver training programs or to build upon existing programs. They hope "to encourage the development of new and novel programs to train both family and professional in-home caregivers, promote skill development, advance the quality of care, and provide opportunities for career development." The deadline for submissions is May 15, 2008. Applications can be downloaded here, or view the press release.

Local Pennsylvania Paper Writes Caregiving Series

This three-part series from the Bucks County Courier Times focuses on caring for someone with Alzheimer's disease and dementia, by sharing one family's experiences. In the first article, writer Jo Ciavaglia talks about how Marjorie Jackson first noticed her mother was developing dementia, and the changes it brought while still undiagnosed. Next, she describes the mounting tasks Jackson begins handling for her mother as her symptoms worsen. It also discusses care options in Pennsylvania. The final article, deals with Jackson's placing her mother into a nursing home and the emotional difficulties of the transition.

Using Humor in Caring for the Terminally Ill

From the UK Journal of Clinical Nursing, Canadian researchers spent nearly 300 hours interviewing staff, patients and their families in both palliative care and intensive care units. They report that the use of humor, by patients and their caregivers, plays a vital role in "promoting team relationships and adding a human dimension to the care and support that staff provided . . ."

Bloggers Discuss Caregiving Challenges

There are a couple of recent personal blog posts we wanted to share this week. First, this post discusses a difficult issue faced by aging parents caring for an adult disabled son. The blogger writes of his brother, who has Muscular Dystrophy and has been in a wheelchair for many years. A recent fall has made the poster question how long his parents can continue to provide care and how hard it will be to have that conversation.

Scott is a full grown man, and he doesn’t have the strength to help when he needs to be transfered from his wheelchair to the bed, or the tub, or his easy chair my dad set up to help his legs rest. And my dad turns 65 this year.

Dad has always been a big bear of a man, but he wont be able to lift Scott forever. . . Even though he needs professional semi-skilled care . . .we might could come up with some arrangement where my brother could be cared for in our homes.

But my parents are stubborn people, and it may sound funny coming from a 43 year old, but I don’t want to disobey them. I think that deep down, all of us, parents and children, know that a day is coming when the two able-bodied sons are going to have to sit down with the parents and say, “No disrespect, but you’re going to have to let it go and let us take over”. But for now, we have instead, this uneasy silence where we sons know what we have to say, but we don’t say it.

I think it’s going to take Scott telling them to let the brothers take over. Ironically, they’ll listen to him.

Thanks to the GenBetween blog for sharing. The second post, part of Virginia Cornue's series of posts on sandwich caregiving, discusses the guilt associated with making decisions about where and how your parents will receive care, and the challenges faced by those caring for young children along with aging parents.

Of all her 11 siblings, my mother was the only one who was in institutional care at the end of her life. This is something I still have not entirely reconciled. This in one of those it's not the right thing to do--not the right way to treat your elders values I hold. But it was the only practical thing to do. . .

. . .If I had been truely a Sandwich Generation participant...if I had had to care for her long distance, AND take care of an infant, go to grad school--commuting an hour or more each way, and teach parttime, do my share of the domestic chores, maintain some sort of marital and social life, I think, NO I know, I would have had not only a nervous breakdown but a physical one as well. . .

. . .More than a decade later, I still miss her daily. Her last days at The Oaks were as good as they could be. She, my model joyolgist, told me scatological nursing home jokes to lighten my heart. But I--I still don't feel right about how her last days ended. My Mom, however, would say differently to me. As is on her gravestone, she would say to me, "Do your best, honey."

Did I? Yes--given the circumstances. I guess that's all we can do in the long run.

Knowing When Your Caregiving Is Too Much

In this post from MSCaregiver.com, a husband ponders whether his caregiving is supportive of his wife's MS, or restrictive. He debates whether his goal should be to help his wife be independent, in the same way he helps his daughters to develop their independence. In the end, he gives this sage advice:

As a caregiver, if you wonder when or whether your caregiving might be “too” caregiving, there’s a simple way to find out. Ask the person for whom you care if you’re doing too much.

Children Assist in Care of Alzheimer's Patients, According to New Study

The Alzheimer's Foundation of America (AFA) released a study last week showing that among so-called "sandwich caregivers" (those who are caring for an elderly relative while also parenting children under 21,) most had children who assisted them in providing care, including attending doctors’ appointments, feeding, and dressing their loved ones. In this third annual study conducted by AFA, 559 caregivers were interviewed in December 2007. From the press release:

Among children, ages 8-21, who are involved in caregiving, many are reported as taking on significant tasks:

• About one-third of young adults (ages 18-21) assist with doctors’ appointments;


• 42% of young adults assist with transporting loved ones with Alzheimer’s disease;


• About one-quarter of young adults and teens (ages 13-17) assist with activities of daily living, such as feeding and dressing;


• Nearly 90% of pre-teens (ages 8-12) visit and entertain a loved one with Alzheimer’s disease (please use caution when interpreting results due to small base size)


• Approximately 85% of teens pay visits to the person with the disease.

“Taking care of someone with Alzheimer’s disease can be an enormous drain on the caregiver and on family resources. For sandwich caregivers the problem is even more acute. It is clear that caregiving is a multigenerational concern. Young adults and even teens and pre-teens are being impacted in life changing ways by their caregiving responsibilities,” said Eric J. Hall, AFA’s president and chief executive officer.

Reminder: PBS Series Caring for Your Parents Airs Tonight

On PBS tonight, Caring for Your Parent - check local listings here. About the program:

As the population ages, many adult children are grappling with an unprecedented social, cultural, economic, and personal revolution as they transition into the primary caregiver role for their aging parents. Produced, written, and directed by award-winning filmmaker Michael Kirk, Caring for Your Parents is a moving two-hour special that draws much-needed attention to this universal reality.

The first 90-minutes of Caring for Your Parents underscores today's struggle to keep parents at home, tensions between siblings, and the complexity of shifting caregiver roles through an intimate look at five American families. In the end, the documentary contends successful caregiving requires one primary ingredient‒love.

Immediately after the 90-minute broadcast, medical correspondent Dr. Art Ulene leads "A Conversation About Caring." This half-hour panel discussion offers concrete advice and guidance on how to start the conversation‒often the most difficult step in caregiving.

Caring for Your Parents is a Kirk Documentary Group, Ltd. Production for WGBH Boston. The executive producer is Laurie Donnelly. Major funding is provided by Harrah's Foundation. Additional funding by the Corporation for Public Broadcasting, a private corporation funded by the American people.

Sibling and Long-Distance Caregiving Issues Examined

We wanted to share two items about sibling and long-distance caregiving. First, Carol O'Dell writes about the difficulty in coordinating caregiving between sibling on her Mothering Mother and More blog.

If you’re the primary caregiver, you may feel resentment toward your “free” sibling who works, goes to movies, take vacations.

If you’re the “other” sibling, you feel guilty. You don’t know where you fit in. You’re uncomfortable speaking up and voicing your opinion because after all, you’re not the one doing all the work–and you’re reminded of that often.

If you’re the third sibling, well, you might as well be in the outer Netherlands. That’s might be how it feels. All those childhood birth order issues get kicked right back up.

Second, an article from the Craig Daily Press (CO) discusses the experience of Rene Mattone, who lives far away from her parents, leaving the responsibility for daily caregiving to her six siblings. Her father is in the early stages of Alzheimer's disease and her mother has cancer.

In some respects, living far away is easier because Mattone doesn’t have to witness the changes in her parents — her father is in the early stages of Alzheimer’s disease and her mother has cancer — yet the distance often leaves her feeling guilty and helpless.

“I feel like I’d like to be able to do more, like I’m a little bit of a disappointment because I can’t be there,” she said.

Living far away from an aging parent — especially one who is injured or sick — can be an emotional rollercoaster for an adult child, who must cope with worry, frustration and feelings of inadequacy. These feelings are compounded by the stress of caring for that person over hundreds or thousands of miles.

Seeking Grandparents for Caregiving Survey

From the Denton Record-Chronicle:

Dr. Bert Hayslip of the University of North Texas Psychology Department and UNT student Shanna Davis are conducting a survey exploring the role of endurance as a resource among grandparents who are raising grandchildren on a full-time basis. The survey will ask questions about the grandparents, the caregiving situation and about the relationship to the grandchild. The survey takes about an hour to do and can be done at home.

To qualify for the project, grandparents must be primarily responsible for the full-time care of their grandchildren, who must be younger than 18 and residing with the grandparent.

Those interested can have the survey mailed to them. All information will be confidential. Each grandparent will be assigned a code number that will uniquely identify them only to Hayslip and Davis; no names will appear on the survey.

Also, grandparent caregivers are under no obligation to complete the survey even if they have begun the project. If desired, participants may receive results of the project when it is completed.

For more information, call 940-565-2675 or e-mail hayslipb@unt.edu

Weinberg Foundation Offering Family and Informal Caregiver Support Grants

The Harry and Jeanette Weinberg Foundation, based in Baltimore, announced a new grants programs aimed at supporting caregivers of the elderly. The Foundation plans to award 12 to 20 grants ranging from $300,000 to $900,000 to nonprofit community groups, who will also need to provide a local match. Non-profit 501(c)(3) organizations, including aging and human service agencies, faith-based and other community-based organizations, tribal organizations, and units of local government are encouraged to apply. For more information, see their website, www.hjweinbergfoundation.org.

Anticipatory Grief Prevalent Among Dementia Caregivers

Professor Jacquelyn Frank, of the University of Indianapolis has examined the challenges faced by caregivers of dementia patients.

Frank gathered responses from more than 400 dementia caregivers around Indiana, most of them spouses and adult children of Alzheimer’s patients . . . she was struck immediately by the responses to this open-ended question: “What would you say is the biggest barrier you have faced as a caregiver?”

Though the respondents’ language varied, a computer analysis found that more than 80 percent of them touched on a common theme: “letting go of the person we used to know,” as one person wrote, or “watching your loved one slip away and forget who people are.”

The comments illustrate two previously noted but seldom-studied phenomena seen in those caring for the terminally ill. “Anticipatory grief” is the pain of losing a loved one, felt in advance of the patient’s death. “Ambiguous loss” is the discordant feeling that comes from interacting with a patient who is physically alive but no longer seems present socially or psychologically.

It’s not surprising that such effects would be common among dementia caregivers, but this study is among the first to document their prevalence.

“The fundamental barrier experienced by Alzheimer’s caregivers appears to be a combination of anticipatory grief and ambiguous loss, rather than hands-on care issues,” Frank says.

Hospice Foundation of America's 2007 book, Living With Grief: Before and After the Death, dealt with the concept of anticipatory grief.

The Strain of Caregiving on Marriages

Last Sunday's Washington Post Magazine featured a look at the stress and strain long-term caregiving causes in marriages. The article follow one couple's caregiving journey, when the wife is diagnosed with Huntington's disease. On Monday, the Post hosted a live discussion with the article's author and the husband featured in the magazine.

PBS Produces Caring for Your Parents

Last month we shared a request for videos from PBS for people caring for elderly parents. The program will be airing April 2, 2008 spring and PBS has placed some of the videos on their website.

"As the population ages, many adult children are grappling with an unprecedented social, cultural, economic, and personal revolution as they transition into the primary caregiver role for their aging parents. Produced, written, and directed by award-winning filmmaker Michael Kirk, Caring for Your Parents is a moving two-hour special that draws much-needed attention to this universal reality."

Recent Study Suggests Dementia and Other Cognitive Impairments Are on the Decline

The results of a national study showing a downward trend in the rate of cognitive impairment among Americans aged 70 and older were widely reported yesterday. The term 'cognitive impairment' is used to cover those suffering from significant memory loss and different types of dementia, including Alzheimer's disease. The study from the journal Alzheimer’s and Dementia was produced by a team of two University of Michigan Medical School physicians and their colleagues. An excerpt from the University of Michigan press release:

"The prevalence of cognitive impairment in this age group went down by 3.5 percentage points between 1993 and 2002 -- from 12.2 percent to 8.7 percent, representing a difference of hundreds of thousands of people."

"And while the reasons for this decline aren't yet fully known, the authors say today's older people are much likelier to have had more formal education, higher economic status, and better care for risk factors such as high blood pressure, high cholesterol and smoking that can jeopardize their brains."

Read coverage of the study reported by the Seattle Times, Boston Globe, and Science Daily. Carol Bradley Bursack, eldercare columnist for OurAlzheimers.com, writes about how seemingly conflicting studies can confuse the general population. (In October 2007, The American Academy of Neurology released a study indicating that among people who develop dementia, those who are more educated lose their memory at faster rate.) Bursack writes:

"One thing these studies all seem to agree on is that people shouldn't quit learning. Exercising one's mind and caring for one's physical health seem to be key to remaining as healthy as possible, overall. Keeping an active mind and body are not guarantees that dementia will not strike. But keeping our minds active and our bodies as healthy as our genes will allow are somethings we can do that certainly will not cause harm, and doing these things can give us hope that we may remain dementia free, or at least put off the effects for a longer period of time. There will always be exceptions, but why not try?"

"The study is also realistic in noting that the sheer numbers of elders who are (and will be) living longer ensures that we will be fighting Alzheimer's and other dementia for years to come. Nothing is 'licked' yet. However, any good news on this front is welcome to we who are on the leading edge of baby boomers, and to our children."

Another Recall Notice - Fentanyl Patches

Actavis Inc., the United States manufacturing and marketing division of the international generic pharmaceutical company Actavis Group, has announced that 14 lots of fentanyl transdermal system CII patches sold in the United States by Actavis' subsidiary Actavis South Atlantic LLC are being voluntarily recalled from wholesalers and pharmacies as a precaution. They include:

Actavis Fentanyl Transdermal System, 25 mcg/hr.
Actavis Fentanyl Transdermal System, 50 mcg/hr.
Actavis Fentanyl Transdermal System, 75 mcg/hr.
Actavis Fentanyl Transdermal System, 100 mcg/hr.

Anyone with Actavis Fentanyl transdermal system patches with the above listed lot numbers should call 877-422-7452.

For more detailed information, please visit the FDA Recall Notice.

Important Recall Information for Caregivers: Duragesic Patch

The American Pain Foundation announced an important recall on their website we wanted to share.

"On Tuesday, February 12, 2008, PriCara, the manufacturer of transdermal fentanyl (Duragesic®), announced that supply lots of their 25mcg/hr patches were recalled due to a flaw in the cut of one edge. To be aware that some patches may unintentionally expose patients directly to the medication gel (because the integrity of the barrier could be compromised), these lots as well as those manufactured by ALZA and sold by Sandoz have been voluntarily recalled to remove them from the market place. Other strength patches (12.5, 50, 75 and 100 mcg/hr) are not affected."

Discussing Caregiver Stress Syndrome

The CareStation blog on AGIS recently opened up a discussion about a CNN article on "caregiver stress syndrome." Readers can join the ongoing forum discussion: is having an official diagnosis to describe the effects of caregiving helpful to the caregiver?

Share Your Caregiving Story with PBS

We're passing along an invitation posted on CaregivingBlog, from a PBS station. They are collecting short video stories from people who have care for elderly family members, and want to know how it has changed their lives.

Simple Caregiving Technique Helps in Dementia Care

An interesting post on The Dementia Caregiver's Toolbox blog, about using the "hand-over-hand" technique to help assist dementia sufferers to complete tasks. An excerpt:

"You, as the caregiver, put your hand over the hand of the person who has dementia and gently guide them to the activity at hand. If the task is walking, you would put your hand over their hand and slowly lead them down the hall, maybe clasping both your hands around their hand. If the task is stirring the cookie batter, you would put your hand over their hand and "show" them the motion used to stir and do it with them. You can use this strategy for helping people get in and out of chairs, brushing teeth, turning on televisions, combing their hair, you name it."

Caregiving Across the States Resource Has Been Updated

The National Center on Caregiving (part of the Family Caregiver's Alliance) has updated the state profiles for their Caregiving Across the States resource. The resource supplies information about publicly-funded caregiver support programs broken down by state. We found out about the update by reading the Minding Your Elders and Terri's Special Children blogs; thanks for sharing.

Rosalynn Carter's Editorial on the Needs of Caregivers

In a recent edition of the CDC's Preventing Chronic Disease journal, former First Lady Rosalynn Carter provides an editorial, "Addressing the Caregiving Crisis." The editorial serves as a "call to arms" for American society to face our caregiving crisis. Mrs. Carter founded and is President of the Board of Directors of the Rosalynn Carter Institute for Caregiving in Georgia. After outlining the impact on family and profressional caregivers and U.S. businesses, she writes:

"To address this 'caregiving crisis,' all sectors of society must come together to develop solutions. A broad and coordinated response should address workforce development, community planning, and caregiver education and support, including regulatory and financing issues, more effective use of technology, and development and dissemination of evidence-based practices in caregiving. Building an infrastructure of supports for caregivers will improve caregiver effectiveness and reduce the harm, injury, and burden that can be associated with caregiving in isolation. Most importantly, I believe there must be a fundamental shift in how we value and support caregivers."

New Study Examines Caregiving Among Gay Seniors

A study from the Journal of Gay & Lesbian Social Services questioned 199 lesbian, gay, and bisexual adults aged 40-85 about their history of giving and receiving care. The researchers from New York University and Pennsylvania State University, found that older gay adults create networks of caregivers to help support each other as they age. An excerpt from the article:

“These findings contradict old myths about elderly gay people leading lonely lives of quiet desperation,” said Dr. Robert-Jay Green, executive director of the Rockway Institute, a national center for LGBT research and public policy. “LGB seniors create vibrant communities of care that overcome the difficulties posed by discrimination or by greater levels of rejection from their biological families.”

Children Can Fear the Future When They Have Two Parents with Dementia

This article from the New York Times examines the concerns of children whose parents are suffering from dementia. When a caregiver has two parents suffering from the disease, there is the added stress of worrying whether you will be afflicted in future years.

The Personality Changes Brought About by Alzheimer's Can Be Disturbing to Family Members

Coping with the mood and personality changes that can accompany Alzheimer's can be particularly challenging for family caregivers. Some wonder if the disease has allowed a patient's true personality to surface. This New York Times article by Denise Grady addresses these concerns and discusses the ways to cope.

Juggling Work and Elder Care

This article, originally appearing in the Investor's Business Daily, discusses how companies are handling elder care issues as more and more employees need to care for aging relatives. Offering flex time, referral services, and help lines are some examples of how businesses are managing.

During the Holidays, Check on Your Elderly Relatives and Friends

Here is a list of straight-forward, practical things to check for when visiting your aging family members and friends during the holiday season (from the blog, Taking Care of Mom at Home.)

Recent Court Decision Could Change Eldercare Options For Some in Maryland

The Baltimore Sun (Dec. 10) reports on a ruling by the Maryland Court of Special Appeals, stating that the state's standards for patients' inclusion in a Medicaid program were stricter than is allowed under federal law. The program is for designed to assist poorer seniors receive care in their homes or communities. An elderly woman daughter, whose mother had been turned down by the prgram, sued the state with the help of AARP and the Maryland Legal Aid Bureau. In Maryland, half the program is paid by the state, half by the federal government. Poorer states pay a lesser share of the costs. Only three states have waiting lists for the program, and Maryland's was the longest.

When Faced With the Challenges of Caregiving, Find a Mentor

Dorian Martin, who cared for her mother and grandmother, offers a wonderful suggestion to those struggling with the new role of caregiver. Find a mentor to help you through. Look to people you already know who have assisted their loved ones and ask for their advice and their support. Read the full article at OurAlzheimer's.com.

Costs of Providing Elder Care Are Higher Than Previously Thought

The New York Times reports on the first in-depth study of the expenses Americans spend to care for aging parents or spouses. The study, conducted by the National Alliance for Caregiving, says those costs average $5,531 per year. According to the article, the report is being released today and will be part of a Capitol Hill briefing this week. The complete report (PDF) is available here.

Caring for an Ailing Spouse In Arizona Has Become More Financially Viable

The Arizona Daily Star reported this weekend that the Arizona Long Term Care System, the state's Medicaid program for the elderly and disabled, will now pay spouses to provide basic health care for husbands or wives. In October, the state received a waiver from the federal government, making the support possible. How much spouses are paid is determined by local caregiving rates, which in Arizona average around $10 per hour.

In October, we posted a report about the financial costs of caregiving that stated Vermont had also received a waiver from Medicaid that enables the state to pay spouses who provide care. In addition, Oregon has paid spousal caregivers for over a decade from another state fund, but this year began running their program through Medicaid. We will make sure to post any additional reports from other states as we learn about them.

New MIT Study on Elder Care Makes Recommendations to Improve Support to Caregivers

Family caregivers provide a significant portion of the care given to the elderly, according to a new study by MIT's Workplace Center. The report offers a summary of ten recommendations to expand support for caregivers in the state of Massasschusetts. The researchers point out that the plan is only a starting point of a conversation, and in order for improvement to take place there is " . . .a need for a cultural shift, a change in attitudes and social values."

Building upon a study started in 2003 that determined family caregivers exist as a "shadow workforce," the MIT Workplace Center convened a public forum in January 2007, "Who Is Caring for the Caregivers?" A panel of five geriatric health care and elder care professionals and over 160 attendees, were asked several questions about the challenges of family caregiving and how to improve supports for caregivers.

Read the complete report here (PDF).

Celebrate Hospice and Family Caregivers This Month

November is National Hospice Month, a month to recognize the invaluable work that hospices do each day, to educate consumers about the benefits of hospice, and to honor those who cope with caregiving and end-of-life issues in their own lives.

HFA has some excellent resources that shatter myths about hospice care and can help promote the concept of hospice.

National Family Caregivers Month (NFC Month) is designated as a time every year to thank, support, educate and celebrate more than 50 million family caregivers across the country currently providing an estimated $306 billion in "free" caregiving services. This year NFC Month will focus on family caregivers speaking up for their rights. The National Family Caregivers Association has a number of materials online.

New Lawsuits Challenge "Family Resposibility Discrimination"

USA Today reports on an increase in lawsuits filed by employees claiming discrimination on the job due to their family caregiving obligations. The federal Equal Employment Opportunity Commission (EEOC) issued a guidance for employers, giving them examples of how bias can occur. The EEOC website also includes a fact sheet for employers which ". . .illustrates circumstances under which discrimination against a working parent or other caregiver constitutes unlawful disparate treatment under the federal EEO statutes."

Safety While Caregiving Should Not Be Overlooked

Nancy Norris, a licensed clinical social worker, gives some tips on home safety for caregivers that are often overlooked in this Ledger Dispatch (Amador City, CA) article.

The Positive Role Hospice Volunteers Play in End-of-Life Care

This post from The Kansan.com shares the experiences of a hospice volunteer at Hospice Care of Kansas. One volunteer, Jennifer Wedan, explains why she became a volunteer. '“I wanted to give something back. Something was laid on my heart to help people go through this experience.”'

Hospice Program Helps Patients Keep Pets

Pets are a central part of many peoples' lives, bringing comfort and companionship. Yet when someone becomes terminally ill, it can be difficult to keep up with a pet's care, or even keep a pet at all if the illness necessitates a move. One hospice program in Tulsa, Oklahoma, has developed an innovative program to allow people to keep their pets even as they face illness and death.

A Man's Perspective on Caregiving

Seth B. Goldsmith, a director of company that operates nursing homes and assisted-living facilities, discusses his role as caregiver for his wife. The Caregiver.com article lays out Goldsmith's ten steps for effective caregiving, which he developed as a result of conversations with friends and family after his wife's death in 1995. The male perspective is often missing from the caregiving dialogue, even though 25% to 41% of family caregivers are men.

Hospice as a Model for Caregiving

HFA's book, Caregiving and Loss: Family Needs, Professional Responses, includes a chapter by Marcia Lattanzi-Licht, which addresses the partnership that is formed between a family and hospice personnel for terminally ill patients. An excerpt:

Hospice as a Model for Caregiving

The partnership formed between a family and hospice personnel can ensure quality care for a person who is dying. Hospice support­ive services are designed to offer information and back-up to fami­ly members so that they will be more able to care for their loved one. Hospice care focuses on addressing some central goals:

• To support individuals and families coping with dying


• To enhance quality of life through comfort care rather than treatment focused on cure


• To aggressively treat and expertly manage all pain and physical symptoms associated with an individual's dying


• To care for the whole person, addressing physical, emotional, psychological, spiritual, and social needs through an interdis­ciplinary team approach


• To confirm the individual's and family's sense of self worth, individuality, autonomy, and security


• To acknowledge and offer support for individuals and their family members facing the losses and grief associated with dying and the death of a loved one


• To extend bereavement support for family members following the death of their loved one


• To be a positive influence upon the understanding, compas­sionate treatment, and care of the dying and bereaved


• (Lattanzi-Licht, Mahoney, & Miller, 1998).

These overall goals are the foundation for hospice and form the value base for its services and activities. When caregiving is offered in the context of these desirable approaches, the individual who is ill experiences an enhanced sense of security and worth. Caregiving that is grounded in a philosophy of caring that respects the wishes of the person who is ill and the family, and maximizes their functioning, represents the kind of support people appreciate most. While many are familiar with the principles of hospice, it is important to explore the application of these principles. The values of hospice represent universal approaches to caregiving and create a blueprint that advances the human experiences of caring.

by Marcia Lattanzi-Licht
© 2001 Hospice Foundation of America
See the Table of Contents from Caregiving and Loss: Family Needs, Professional Repsonses.

Prejudice Against Gays Experienced By Those Receiving Eldercare

A recent New York Times article, "Aging and Gay, Facing Prejudice in Twilight," addresses the current difficulties faced by gays and lesbians needing eldercare. The article reports that elderly gays in nursing homes, assisted-living centers and those receiving home care report being disrespected, shunned or mistreated.

Some elderly gay people have begun a national drive to educate care providers about the social isolation and discrimination they are facing. The articles also discusses some solutions that are being offered to the problem.

The Financial Costs of Caring for a Spouse

Claire Howard of the Journal Star reports on the financial implications of caregiving for patients with chronic or terminal illness. In most cases in the United States, spouses cannot be paid as caregivers, forcing many couples to make difficult decisions regarding care. Many spouses work outside the home, placing their loved one in long-term care or a nursing home. Others resort to divorcing in order to be paid for giving care to their former spouse. Howard relates personal examples of these difficult choices.

Valuing the Invaluable

This issue brief, released by AARP in June 2007, tries to put a monetary value on the services provide by the “informal” or “family” caregiver. Informal caregivers provide the majority of long-term care services, yet they often go unrecognized. Furthermore, these informal caregivers often spend their own money to support family members in addition to losing wages and other job benefits, frequently having to cut back on work or give up working entirely. The issue brief concludes with some suggested policy changes that could be implemented at a small fraction of the value of the services these caregivers provide.

Caring for Family Members with Alzheimer's and Dementia Patients Creates Challenges

Jeanne M. West,a registered nurse and health care administrator, writes in a Pennsylvania newspaper of the difficulty providing care for those suffering from Alzheimer's disease and dementia. Despite the fact that West had taught caregiving skills for 20 years, with a particular emphasis on the care of seniors and those with dementia and Alzheimer's disease, she found herself challenged when she needed to provide care for her husband who was diagnosed with dementia. West is a past president and board member of the Central Coast Chapter (Santa Barbara, Calif.) of the Alzheimer’s Association.

The Importance of Volunteers in Hospice and Palliative Care

Nancy Forsyth, a palliative care volunteer for 25 years, speaks of the importance of volunteering to care for the terminally ill. Forsyth has an aggressive form of lung cancer and is forgoing further treatment for the cancer. The Shoreline Beacon article discusses how her experience as a volunteer is helping her while dealing with her own illness.

Are you interested in becoming a hospice or palliative care volunteer ? Volunteers in hospice find it personally gratifying, intellectually stimulating, and emotionally meaningful to assist those in need at a critical point in their lives.

New Social Networking Sites Cater to Caregivers

The New York Times (9/12/07) highlights the growth of social networking sites that cater to users older than the users of typical social networking sites such as Facebook and MySpace. These networking sites allow people to connect with others in their generation, share interests, and remain active.

Other websites help family members assisting aging loved ones. AGIS (AssistGuide Information Service) has a new website for family members looking for information and assistance with eldercare and other issues. The AGIS forums discuss topics such as caregiving, grief, Alzheimer's and dementia, and much more. These new websites address an aging population in two ways: by empowering seniors through social networking, and by assisting families in meeting the needs of their aging family members.

Children as Caregivers, the Burdens Placed on Kids with Chronically Ill Parents

This in-depth piece by Washington Post reporter Michael Alison Chandler looks at the role more and more children are playing as caregivers for their chronically ill parents. Chandles sites a 2005 survey by the United Hospital Fund and the National Alliance for Caregiving that shows as many as 1.4 million children in the United States from age 8 to 18 care for a chronically ill or disabled relative. The burden of caring for ill parents is having a huge effect on these children, and there are few public services to offer needed assistance.

Published August 25, 2007

The Words We Use to Describe Caregiving

Sharon K. Brothers, MSW, blogs on the "Caregiver's Language of Caring" and how words reflect a caregiver's feelings about the people they care for. Her blog, Caregiving at the Crossroads, offers a personal look at caregiving training.

HFA's Caregiver's Corner offers tools and support for caregivers at each step of the caregiving journey.

Posted September 4, 2007

An Author's View on Caregiving and Hospice

Author Carol D. O'Dell (Mothering Mother) discusses how hospice can assist caregivers and patient in knowing when to say goodbye.

Order HFA's The Dying Process: A Guide for Caregivers to learn more about caring for a teminally ill patient.

Posted August 28, 2007

Taking Care of the Caregiver

This article appearing in the Discovery Bay Press discusses the importance of balancing caregiving and self-care for the caregiver.

If you are a caregiver, visit HFA's Caregiver's Corner for a wealth of tools and information and order HFA's Caregiver's Guide which prepares caregivers for the dying process.

Published August 24, 2007.