In February 2012, the administration announced that it would take immediate action to implement parts of the plan, including making additional funding available in fiscal year 2012 to support research, provider education and public awareness. Yesteday the Secretary announced additional specific actions, including the funding of two major clinical trials, jumpstarted by the National Institutes of Health’s (NIH) infusion of additional FY 2012 funds directed at Alzheimer’s disease; the development of new high-quality, up-to-date training and information for our nation’s clinicians; and a new public education campaign and website to help families and caregivers find the services and support they need.

To help accelerate this urgent work, the President’s proposed FY 2013 budget provides a $100 million increase for efforts to combat Alzheimer’s disease. These funds will support additional research ($80 million), improve public awareness of the disease ($4.2 million), support provider education programs ($4.0 million), invest in caregiver support ($10.5 million), and improve data collection ($1.3 million).

“These actions are the cornerstones of an historic effort to fight Alzheimer’s disease,” Secretary Sebelius said. “This is a national plan—not a federal one, because reducing the burden of Alzheimer’s will require the active engagement of both the public and private sectors.”

The plan, presented today at the Alzheimer’s Research Summit 2012: Path to Treatment and Prevention, was developed with input from experts in aging and Alzheimer’s disease issues and calls for a comprehensive, collaborative approach across federal, state, private and non-profit organizations. More than 3,600 people or organizations submitted comments on the draft plan.

As many as 5.1 million Americans have Alzheimer’s disease and that number is likely to double in the coming years. At the same time, millions of American families struggle with the physical, emotional and financial costs of caring for a loved one with Alzheimer’s disease.

The initiatives announced yesterday include:

• Research – The funding of new research projects by the NIH will focus on key areas in which emerging technologies and new approaches in clinical testing now allow for a more comprehensive assessment of the disease. This research holds considerable promise for developing new and targeted approaches to prevention and treatment. Specifically, two major clinical trials are being funded. One is a $7.9 million effort to test an insulin nasal spray for treating Alzheimer’s disease. A second study, toward which NIH is contributing $16 million, is the first prevention trial in people at the highest risk for the disease.
• Tools for Clinicians – The Health Resources and Services Administration has awarded $2 million in funding through its geriatric education centers to provide high-quality training for doctors, nurses, and other health care providers on recognizing the signs and symptoms of Alzheimer’s disease and how to manage the disease.
• Easier access to information to support caregivers–HHS’ new website, www.alzheimers.gov, offers resources and support to those facing Alzheimer’s disease and their friends and family. The site is a gateway to reliable, comprehensive information from federal, state, and private organizations on a range of topics. Visitors to the site will find plain language information and tools to identify local resources that can help with the challenges of daily living, emotional needs, and financial issues related to dementia. Video interviews with real family caregivers explain why information is key to successful caregiving, in their own words.
• Awareness campaign – The first new television advertisement encouraging caregivers to seek information at the new website was debuted. This media campaign will be launched this summer, reaching family members and patients in need of information on Alzheimer’s disease.

Today’s announcement demonstrates the Obama administration’s continued commitment to taking action in the fight against Alzheimer’s disease.

In 2013, the National Family Caregiver Support Program will continue to provide essential services to family caregivers, including those helping loved ones with Alzheimer’s disease. This program will enable family caregivers to receive essential respite services, providing them a short break from caregiving duties, along with other essential services, such as counseling, education and support groups. (Editor’s Note: The National Family Caregiver Support Program funds local Area Agencies on Aging to provide services to help family caregivers.)

For more information on the national plan to address Alzheimer’s disease, visit: www.alzheimers.gov.

To read the National Plan to Address Alzheimer’s Disease, visit http://aspe.hhs.gov/daltcp/napa/NatlPlan.pdf.

What do you think of the plan? Please share your thoughts in our comments section, below.

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Jan shared her perspective on caring for her mom in the article, “Caring for Elderly Parents Catches Many Unprepared.” “When you get into the trenches, it’s literally baptism by fire,” she explains in the article. “New things come up. It’s not just about advance planning for finances or medical care. It’s everything.”

You can read the article here. Be sure to add your comments at the bottom of the story.

Thanks, Jan, for speaking out!

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The Obama Administration today announced new efforts to fight Alzheimer’s disease, including immediately making an additional $50 million available for cutting-edge Alzheimer’s research. In addition, the administration announced that its Fiscal Year 2013 budget will boost funding for Alzheimer’s research by $80 million.  Today’s announcement also includes an additional $26 million in caregiver support, provider education, public awareness and improvements in data infrastructure.

In January 2011, President Obama signed the National Alzheimer’s Project Act, which calls for an aggressive and coordinated national Alzheimer’s disease plan.  The Act also establishes an Advisory Council on Alzheimer’s Research, Care, and Services, which brings together some of the Nation’s foremost experts on Alzheimer’s disease to inform the development of the national plan. The preliminary framework for the National Alzheimer’s Disease Plan identifies key goals including preventing and treating Alzheimer’s disease by 2025.  As work on the plan continues, the Obama Administration is taking action.

“Today’s announcement reflects this administration’s commitment to confronting Alzheimer’s, a disease that takes a devastating toll on millions of Americans,” said HHS Secretary Kathleen Sebelius.  “We can’t wait to act; reducing the burden of Alzheimer’s disease on patients and their families is an urgent national priority.”

As many as 5.1 million Americans currently suffer from Alzheimer’s disease, which is a progressive, irreversible brain disorder that destroys memory and thinking skills. With the aging of the U.S. population, the number of people with Alzheimer’s disease could more than double by 2050.

“These projections are simply staggering,” said National Institutes of Health (NIH) Director Francis S. Collins, M.D., Ph.D. “This new funding will accelerate NIH’s effort to use the power of science to develop new ways of helping people with Alzheimer’s disease and those at risk.”

Together, the fiscal years 2012 and 2013 investments total $130 million in new Alzheimer’s research funding over two years – over 25 percent more than the current annual Alzheimer’s research investment.

The additional NIH research funding will support both basic and clinical research. Investments will include research to identify genes that increase the risk of Alzheimer’s disease and testing therapies in individuals at the highest risk for the disease.  On the clinical side, the funds may be used to expand efforts to move new therapeutic approaches into clinical trials and to develop better databases to assess the nation’s burden of cognitive impairment and dementia.

The initiative announced today also includes $26 million to support additional goals in the preliminary National Alzheimer’s Disease Plan.  While the plan continues to be developed, experts have identified several goals that will be supported by today’s announcement, including support for caregivers in the community, improving health care provider training, and raising public awareness.

“These new funds will help increase our understanding about how to manage Alzheimer’s disease, especially those services that allow families to plan in the early stages and support family caregivers,” said HHS Assistant Secretary for Aging Kathy Greenlee.

So, what do you think? How would like the funds for caregiver support to be used? Please share your thoughts in our comments section, below.

The theme of the first challenge is using health IT to support New Year’s resolutions. Cash prizes totaling $5000 will be distributed among the producers of the winning videos. The video contest launched today and is open until February 16, 2012.

Sample entries could include the following types of resolutions:
—I will set up an online personal health record for myself (or another family member) so I can have all of my health information conveniently stored in one place.
—I will ask my doctor for a copy of my own health records—electronically if available—and help him or her to identify any important information that may be missing or need to be corrected.
—I will find an online community that helps me figure out the best ways to manage my health condition (depression, cancer, diabetes, etc.).
—I will use a wireless pedometer to help me track my physical activity on a computer and remind me to increase the number of steps I take per day.
—I will find an app on my Smartphone to help me track my food intake so I can lose 10 pounds by my high school reunion.
—I will sign up for a text reminder program on my cell phone to help me stop smoking or remind me to take my medications on time.

Please help to make this challenge a success, and make 2012 a healthier year! You can enter the contest yourself or help to spread the word about it to others using the twitter hashtag #HealthIT4U2012. ONC’s one-stop shop for consumer information on health IT—HealthIT.gov—already features several compelling stories about how health IT has helped people and their health care providers save lives, beat cancer, and weather a natural disaster. The video challenges are a chance to add your story to the mix and win cash prizes. Future video challenges will include among other themes, using health IT to maintain a healthy heart, support the role of caregivers, and manage health care dollars and time more wisely.

This challenge is one of many ways that ONC’s new Consumer e-Health Program is working to promote patient and family engagement in health through technology by improving consumer access to their electronic health information; spurring the development of tools to make that information actionable; and shifting attitudes so people feel comfortable using new tools and health information to be better partners in their own health care.

To learn more about this challenge and others, please visit: http://healthynewyear.challenge.gov. All challenges will be featured on http://www.challenge.gov. The challenges will run through the summer.

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Multi-Generational Views on Family Financial Obligations: A MetLife Survey of Baby Boomers and Members of Generations X and Y reports that Baby Boomers (b. 1946-1964), Gen Xers (b. 1965-1976) and Gen Yers (b. 1977-1990) agree that parents should support children through their college years, help with tuition (90%) and step in to provide financial assistance during a financial emergency not of the child’s doing.

They stop short, however, at paying 100% of college tuition if the cost is particularly high, and at bailing their kids out of debt when the debt is from overspending. Fewer feel responsible for contributing to the down payment on a house; just seven percent of those surveyed said they feel an absolute or strong responsibility to do so.

Most Americans also believe that children have some obligation to help their parents financially if necessary, though many parents (42%) say they wouldn’t accept money from their children. More than six in ten (62%) believe children should call their parents at least once a week to see how they are doing; 58% say children should have a parent live with them for health or economic reasons (50%). Forty-six percent say they should provide financial support to their elder parents or in-laws if there is a need.

Saving for retirement to avoid dependence on family is important to most who also believe in protecting their families should they die early. Across the generations, nearly four in five (78%) respondents believe there is an obligation to provide for a surviving spouse if one dies unexpectedly. More than half (52%) believe in leaving something for younger children, typically enough to carry them through at least part of college (55%). Six in ten (63%) Gen Y and Gen X respondents feel providing for children is important, compared to 38% of Boomers, likely because many children of Boomers are now adults.

Even given the desire of Americans to leave enough money if they were to die unexpectedly, 41% with life insurance coverage say their coverage falls short or aren’t sure they are covered adequately. Gen Xers are most likely to believe they have inadequate coverage (40%), compared to 28% of Boomers and 31% in Gen Y.

Additional findings include:
1. Boomer parents (75%) are more likely to have provided financial assistance with items other than education or a house, compared to 40% of Gen X parents with adult children. Fifty-seven percent of Gen Yers have received such support from parents or grandparents, compared to 36% of Boomers.
2. Only 35% of Boomers say they received support for college tuition from their parents, but all three of the generations studied believe it is their obligation to do so for their children.
3. More than four in 10 respondents (44%) say they would feel a strong or absolute responsibility to help an adult child with a financial setback not of their own making. Only 11% feel obligated to help when the situation results from poor spending habits.
4. When asked when their financial responsibility to their children ends, parents generally say it’s when the children are finished with college and that if kids don’t attend college after high school, they should be working.
5. Seven in 10 Boomers (70%) say enjoying retirement takes precedence over leaving an inheritance; just 64% of Gen Xers and 57% of Gen Yers agree.

What do you think? How do you view financial support of family members? More important, how do you balance financial support given your caregiving situation? Please share your thoughts in our comments section, below.

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According to the study, a family caregiver’s health decreases over time as their caree’s dementia increases. The study found that the strain of caring for someone with Alzheimer’s disease can cause family caregivers to use health care services, such as ER visits, hospital visits and doctor visits, at higher rates than non-caregivers of the same age, at an average annual cost increase of $4,766 per caregiver. The study was based on a secondary data analysis of a segment of the Reach I caregiver population whose healthcare was monitored over 18 months.

The self-rated health scores of family caregivers caring for persons with Alzheimer’s disease declined steadily and significantly over the length of the study. The use of all types of healthcare services also increased, some significantly. Emergency room visits and hospital-based services doubled over that time.

Caregiving Costs was produced by Richard Schulz, PhD, and Thomas Cook, PhD, MPH from the University Center for Social and Urban Research, Department of Psychiatry, University of Pittsburgh, in collaboration with the National Alliance for Caregiving and supported by The Alzheimer’s Immunotherapy Program of Janssen Alzheimer Immunotherapy & Pfizer Inc.

For more information on the study, visit www.caregiving.org.

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Across our country, millions of family members, neighbors, and friends provide care and support for their loved ones during times of need. With profound compassion and selflessness, these caregivers sustain American men, women, and children at their most vulnerable moments, and through their devoted acts, they exemplify the best of the American spirit. During National Family Caregivers Month, we pay tribute to the individuals throughout America who ensure the health and well-being of their relatives and loved ones.

Many of our Nation’s family caregivers assist seniors and people with disabilities to help improve their quality of life. Their efforts help deliver short-term comfort and security, facilitate social engagement, and help individuals stay in their homes and communities as long as possible. This heroic work is often done while caregivers balance other commitments to their families, jobs, and communities. As these remarkable individuals put their own lives on hold to tend to their family members, it is our responsibility to ensure they do not have to do it alone.

To ease the emotional and financial burdens that can accompany caregiving, my Administration has striven to support family caregivers for the crucial role they perform. Vice President Joe Biden’s Middle Class Task Force has focused on the importance or investing in respite care, counseling, and training for individuals who serve aging Americans. These initiatives would give family caregivers a leg up as they continue to support their aging loved ones.

One of our Nation’s greatest responsibilities is to ensure our veterans, their families, and their caregivers receive lasting and comprehensive support. Last year, I signed the Caregivers and Veterans Omnibus Health Services Act, which helps fulfill this obligation by extending additional assistance to family members who care for severely wounded veterans from Iraq and Afghanistan. Our military caregivers exemplify the heroism found not only on the fields of battle, but also in the hearts of those who tend to our wounded warriors when they come home.

As we observe National Family Caregivers Month, we honor the tireless compassion of Americans who heal, comfort, and support our injured, our elders, and people with disabilities. This month and throughout the year, let the quiet perseverance of our family caregivers remind us of the decency and kindness to which we can all aspire.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim November 2011 as National Family Caregivers Month. I encourage all Americans to pay tribute to those who provide for the health and well-being of their family members, friends, and neighbors.

IN WITNESS WHEREOF, I have hereunto set my hand this first day of November, in the year of our Lord two thousand eleven, and of the Independence of the United States of America the two hundred and thirty-sixth.

BARACK OBAMA

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The highest average daily rates for nursing homes continue to be in Alaska, where rates decreased slightly to $655 for a private room compared to $687 in 2010. Costs were lowest in Louisiana, outside the Baton Rouge and Shreveport Metropolitan Statistical Areas (MSA), at an average of $141 per day for a private room.

For assisted living, the Washington, D.C. area had the highest average monthly base rate at $5,757, a 10% increase from last year. Arkansas, outside of the Little Rock MSA, had the lowest average monthly rate of $2,156, also an increase.

“This year’s increases are greater than previous years. The state of the economy, combined with rising health care and energy costs, are having a significant impact on long-term care rates. In fact, long-term care rates continue to outpace the medical inflation rate,” said Sandra Timmermann, Ed.D., director of the MetLife Mature Market Institute. “The result is dramatic protracted inflation that will impact consumers. As the cost of care continues to rise, Americans need to discuss long-term care planning with their families now, to ensure they receive the kind of care they want in the future. This is especially critical at a time when retirement savings rates are low.”

The MetLife Market Survey and accompanying report provide a good deal of additional information regarding various types of long-term care available in the U.S. and a detailed breakdown of costs by region.

Nursing Homes:
–According to the U.S. Census Bureau, in 2010, 66% of nursing home residents were women. The median age of residents was 82.7 years.
–Fifteen percent of nursing homes surveyed have an associated assisted living unit or wing; 11% are part of a continuing care retirement community (CCRC).
–A small percentage (10%) of nursing homes surveyed provide adult day services.
–The majority (87%) of nursing homes surveyed provide Alzheimer’s or dementia care; of those, 80% charge the same rate for care.

Assisted Living:
–Current estimates from the American Seniors Housing Association indicate that the average age of an assisted living resident is 86.9 years old, and the median length of stay in assisted living is 25.6 months.
–Oversight of assisted living communities rests primarily with state governments rather than federal regulation. In 2007, several states strengthened existing standards or implemented new standards for communities with residents with Alzheimer’s disease or other forms of dementia.
–Almost three-quarters (72%) of assisted living communities surveyed provide Alzheimer’s and dementia care, 50% of which charge an additional fee for the service.

Home Health Care:
–The majority (79%) of the home health care agencies surveyed provide Alzheimer’s training to their employees, and almost all (99%) agencies surveyed do not charge an additional fee for patients with Alzheimer’s.
–While most home care agencies surveyed provide an hourly rate, 81% of the agencies require a minimum number of hours per day ranging from 30 minutes to eight hours with three hours being the average. Small percentages (3%) provide a daily rate. About 32% of those surveyed have a 24-hour or live-in rate. The average daily live-in rate for a home health aide is $258 and $255 for a homemaker/companion.

Adult Day Services Centers:
–More than three-quarters of adult day services centers surveyed are open Monday through Friday; 6% are also open Saturdays and 13% are open seven days per week. For those open 24 hours, 67% provide full adult day services for all 24 hours. Seven in ten centers provide transportation services to and from the center. Of these, 47% do not charge a fee for these services. Of those that charge for transportation, the average one-way fee is about $8.
–Almost all (98%) of the centers surveyed provide services for those with Alzheimer’s disease, with 2% of these charging an additional fee.

The 2011 MetLife Market Survey of Nursing Home, Assisted Living, Adult Day Services, and Home Care Costs can be downloaded from www.MatureMarketInstitute.com. The publication can also be ordered through Contact Us on the MetLife Mature Market Institute Web site, by writing to: MetLife Mature Market Institute, 57 Greens Farms Road, Westport, CT 06880 or by e-mailing MatureMarketInstitute@metlife.com.

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Caregiving has some interesting benefits. Consider:

1. Family caregivers have a lower mortality rate than non-caregivers.

2. Family caregivers are physically stronger than non-caregivers.

3. Family caregivers scored better on memory tests than non-caregivers.

4. Caregiving can lengthen your life. (You can listen to my 2009 talk show interview with the researcher who research offered this conclusion here.)

Let’s do an informal poll: Consider your friends, family members and colleagues who are non-caregivers. How do you feel your mental, physical and spiritual health compares to them? Please cast your vote in our poll, below. And, feel free to share any thoughts in our comments. (And, be sure to listen to the 2009 talk show; you’ll find it very interesting).

Updates

1. Help get the word out about Job Jar Day! On October 22, we’re encouraging family and friends to help the family caregiver in their lives. Feel free to share our press release on Twitter, Facebook and with your local media.

2. Our next #carechat takes place on Sunday, October 16, at 8 p.m. ET. We’ll talk about how to cope with the changes in caregiving. To join us, just go to tweetchat.com, log in with your Twitter credentials and enter our hashtag: carechat.

3. Our next live call-in episode of Your Caregiving Journey airs October 18 at 7:30 p.m. ET. Call in and share your answers and insights to this question: What’s scary about caregiving? Call (646) 652-4944 to share during our live show. Or, join our show’s chat room to post your insight. If you’re on Twitter, you can tweet during the show using this hashtag: #caretalk.

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National Alzheimer’s Project Act, signed into law in January, will create a coordinated national plan to overcome the Alzheimer’s crisis and will ensure the coordination and evaluation of all national efforts in Alzheimer’s research, clinical care, institutional, and home- and community-based programs and their outcomes.

The advisory council will hear presentations and provide feedback on inventories of federal activities to address Alzheimer’s disease and related dementias, gaps that can be addressed, and opportunities for collaboration. The advisory council is specifically charged with discussing and making recommendations to Kathleen Sebelius, secretary of health and human services, on priorities for a national plan to address Alzheimer’s disease and related dementias.

The advisory council consists of 22 members, including two patient advocates, two family caregivers, two health care providers, two representatives of state health departments, two researchers, and two voluntary health association representatives.

You can be a part of tomorrow’s meeting:

• View a webcast of the meeting here (password is NAPA2011).
• Listen in by phone by calling (888) 995-9570; passcode is 1781361.
• Send your comments and suggestions via email to  NAPA@hhs.gov or by writing: Helen Lamont, Ph.D., H.H.S. Office of the Assistant Secretary for Planning and Evaluation, Room 424E, Humphrey Building, 200 Independence Avenue, SW, Washington DC 20201

To learn more about NAPA and its advisory council, visit here.

(Editor’s Note: Thanks to Paula Span and The New York Times blog, The New Old Age, for the heads-up about tomorrow’s meeting.)

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