Alzheimer's Association - Facts and Figures

The Alzheimer’s Association Facts and Figures report details the growing prevalence and escalating impact of Alzheimer’s and dementia on individuals, caregivers, families, government and the nation’s healthcare system.

 

Unpaid caregivers and stress

There are nearly 15 million Alzheimer’s and dementia caregivers providing 17 billion hours of unpaid care valued at $202 billion. Facts and Figures finds that caregivers not only suffer emotionally but also physically. Because of the toll of caregiving on their own health, Alzheimer’s and dementia caregivers had $7.9 billion in additional health care costs in 2010. More than 60 percent of family caregivers report high levels of stress because of the prolonged duration of caregiving and 33 percent report symptoms of depression.

Created from data from the Alzheimer’s Association 2010 Women and Alzheimer’s Poll, October 2010.
Source: Alzheimer’s Association 2011 Alzheimer’s Disease Facts and Figures.

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Deaths from Alzheimer's disease

Alzheimer’s is the sixth-leading cause of death in the country and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed. Based on mortality data from 2000-2008, death rates have declined for most major diseases while deaths from Alzheimer’s disease have risen 66 percent during the same period.

Source: Alzheimer’s Association 2011 Alzheimer’s Disease Facts and Figures.

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Alzheimer facts in each state

The 2011 Alzheimer's Disease Facts and Figures report also contains data on the impact of this disease in every state across the nation. Click below to see the effect that Alzheimer's is having in your state.

Measuring Person-Centered Caregiving

by John Davy on February 15, 2011 in Aging in Action

Person-centered care has become the dominant model for dementia care in the US and UK. This model emphasizes that older adults who are receiving care should be viewed as social beings in a relationship. More concretely, this involves recognizing the personality, values and individual needs of the care recipient, and understanding their behavior through this lens. Within this framework, so-called resistive behaviors, such as withdrawal or aggressive behaviors toward caregivers, are framed as a sign of individual needs.

Despite the growing emphasis on person-centeredness, there has been relatively little done to formally measure the person-centeredness of caregivers. Researchers at Wichita State University and the University of Kansas recently published a study (Lann-Wolcott et al 2011) to validate two measures of person-centered caregiving, and to determine whether person-centeredness would reduce resistive behaviors on the part of individuals with dementia. One of these, the Person-Centered Behavior Inventory (PCBI) measures the extent to which the caregiver performed a set of targeted person-centered behaviors. The other measure, the Global Behavior Scale (GBS), does not count specific behaviors but is a more general assessment of the manner in which care is delivered. Further, the study explored a few other questions about the instruments– for example, whether different kinds of patients responded differently to person-centered care, and whether there was an effect of caregiver age.
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You're Sick. It's Serious.

The American Academy of Hospice and Palliative Medicine has just released a new video called "You're Sick. It's Serious."

Immigration Reform: A Key Retirement Issue - The Best Life (usnews.com)

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By Philip Moeller

With Social Security and Medicare programs facing deficit-cutting proposals in the new Congress, seniors and their advocacy groups already have big issues on their plates. Yet a good case can be made that immigration reform is another emerging issue for millions of seniors who need care. The shifting outlook has several components—rising demand for care due to a growing elderly population, a sustained effort to provide elder care in homes rather than institutions, a shrinking work force of Americans, and an economic recovery that will eventually reduce the supply of family members available to provide unpaid care.

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VA Caregiver Support Line

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On February 1, 2011, the Department of Veterans Affairs (VA) opened a toll-free National Caregiver Support Line.  The support line serves as a primary resource/referral center to assist caregivers, Veterans and others seeking caregiver information to help in the care of our Nation's Veterans.

Calls to The National Caregiver Support Line will be answered by VA employees who are licensed clinical social workers.

The Support Line provides information on VA/ community caregiver support resources and "warm" referral to dedicated Caregiver Support Coordinators located in every VA Medical Center; emotional support for the caregiver is an integral component of this service. The National Caregiver Support Line is also available to respond to inquiries about the caregiver benefits associated with Public Law 111-163, Caregivers and Veterans Omnibus Health Services Act of 2010.

The National Caregiver Support Line will be open Monday through Friday 8:00 a.m. to 11:00 p.m. and Saturday 10:30 a.m. to 6:00 p.m. Eastern Time, the Toll-Free number is 1-855-260-3274.

You can also visit the VA's updated VA Caregiver Support: Caring for those Who Care Website

Caregiving Strain and Estimated Risk for Stroke and Coronary Heart Disease Among Spouse Caregivers – Journal Article

High caregiving stress has been associated with poor physical and psychological health, and with increased mortality among spouse caregivers. This study examined the differential effects of stress on stroke and coronary heart disease (CHD) risk by race and sex. Caregiving strain was significantly associated with higher estimated risk for men, particularly African American men, providing caregiving to their wives.

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New German Robot Designed to Help Caregivers

A new robot being developed in Germany is expected to be on the market within the next few years. Researchers hope that the machine, called Casero, will hopefully be able to accommodate some of the growing need for health products and services by aging baby boomers and seniors, according to TMCNet.com.

Unlike other electronic caretakers under development, Casero is strictly designed as a service vehicle for senior living homes and can carry up to 100 kilograms.
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Grandma's Vital Signs on Your Phone

by Eric Bogatin

Automated home health monitoring may finally become practical with the HealthTune 360 from Boston LifeLabs. Cambridge, Mass. start-up Boston LifeLabs recently announced a new product for at-home health monitoring, which the company plans to make available within a few weeks in the U.S. pending FDA approval.

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Funny Prayer about Getting Old at the Caregiver of the Year Dinner

A Reminder That Laughter is the Best Medicine from the Caregiverstress.com web page



Download a copy of the poem, Blessed In Aging (PDF 275k), which Mary reads at the end of her prayer.

Gail Gibson Hunt Appointed to the Governing Board of the Patient Centered Outcomes Research Institute (PCORI)

Washington DC - (Nov. 12, 2010) - Acting Comptroller General of the United States Gene Dodaro today announced the appointment of Gail Gibson Hunt, President and CEO of the National Alliance for Caregiving, to the Governing Board of the Patient Centered Outcomes Research Institute (PCORI).

"Ms. Hunt brings to the PCORI Board the important perspective of a broad spectrum of patients and their caregivers," Dodaro said.

Hunt has been appointed to the Board to replace Andrew Imparato. Imparato is leaving his position as President and CEO of the American Association of People with Disabilities and his appointment to the PCORI Board of Governors to become Senior Counsel and Disability Policy Director for the Senate Committee on Health, Education, Labor & Pensions (HELP).

Gail Gibson Hunt is President and CEO of the National Alliance for Caregiving, located in Bethesda, MD. The Alliance is a diverse coalition of national organizations that seeks to advocate for and serve as a research and training resource for family caregivers of patients/consumers across the lifespan. Ms. Hunt's previous positions include President of a management consulting firm specializing in aging and a senior manager for human services at KPMG Peat Marwick. Ms. Hunt serves as a member of the Advisory Panel for Medicare Education, and as a board member of the Center for Advancing Health and of Vinson Hall in McLean, VA, and was on the NIH State of the Science Panel on Preventing Alzheimer's and Cognitive Decline. She was a member of the Policy Committee of the 2005 White House Conference on Aging. She has been active in many national and international conferences on family caregiving, and also helped to develop an international coalition of caregiving groups. Ms. Hunt received her BA from Columbia University.

When the Family Needs an Umpire - NYTimes.com

Image via CrunchBaseBy JOSHUA TAPPER

The home care aide didn’t expect her new charge to be particularly cantankerous. After all, she had worked for the elderly woman’s sister for four years, and they’d gotten along well.

But the new relationship was rocky from the start. More than once the aide received confusing calls from the 88-year-old woman late at night. She traveled to the woman’s apartment on the Upper West Side, only to be met with a curt “What’s going on? Why are you here?” The older woman, bedridden and recovering from a broken hip, repeatedly told the caregiver to leave because she didn’t need help.

Frustrated and angry, the aide threatened to quit. That’s when the patient’s family called in Joy Rosenthal, an elder mediator.

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Caregiving Without Siblings - NYTimes.com

By PAULA SPAN

Yet Ms. Milgram-Bossong e-mailed me a few weeks back to say, “I am frightened, horrified in fact, of the near future.” The reason: She’s an only child.

“There could be some agonizing times ahead, and I’m facing it alone,” she said when I called. Research shows that even when there are several adult children, just one (a daughter, usually) emerges as the so-called primary caregiver and handles the bulk of her parents’ care. But Ms. Milgram-Bossong finds that minor consolation.

“Even if I had a sibling in California, I’d have someone to talk to. I have no one to bounce ideas off, to think about what I’m not thinking about,” she said. Widowed in her 50s with no children, she’s determined to do well by her parents when they need her, but the prospect keeps her awake nights.


Regina Milgram-Bossong, meet Margaret Reiss, 48, an insurance broker in San Francisco. Ms. Reiss knows that her parents, living independently in Florida, will need help before very long. Her father is still strong at 90, but becoming more forgetful; her mother, 94, is mentally sharp but physically very frail. “I’d like to talk and think about these decisions before we need to make them,” Ms. Reiss told me.

But having a brother in California and a sister in Maryland, both older, hasn’t helped. “We’re not on the same page,” she lamented.
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Celebrate with AoA: Tenth Anniversary of the National Family Caregiver Support Program!

Serving as a caregiver for a loved one is both challenging and rewarding.  All too often, the efforts of family caregivers go unnoticed.  To honor this dedication and commitment, the U.S. Administration on Aging is excited to announce the Year of the Family Caregiver.

November 2010 marks the 10th Anniversary of the National Family Caregiver Support Program (NFCSP).  To help celebrate this milestone and to highlight the important role caregivers play in the everyday lives of those for whom they provide care, AoA would like to help you recognize the tremendous efforts of family caregivers.  A new website, www.celebratingfamilycaregivers.org has been created and is equipped with the tools and materials you need to organize, publicize, and host events to honor caregivers and celebrate the NFCSP’s accomplishments.

On this website, you can learn about the impact and importance of family caregivers; download tools and resources to plan and host a caregiver event in your area; view upcoming events nationwide on the commemorative calendar; add your own events to the calendar; and view video and written testimonials from other caregivers as well as share you own stories. 

Please take full advantage of this website.  It is a useful tool designed and built for many types of organizations.  Join AoA in celebrating the Year of the Family Caregiver, reflecting on the past 10 years of progress and looking ahead to the next decade of caring.   

Till Dementia Do Us Part: Alzheimer's Caregivers, Spouses Seek New Love, Relationship - AARP Bulletin

by: Cynthia Ramnarace | from: AARP Bulletin

For 10 years, A.B. Amis shepherded his wife, Frances, through the dark maze of Alzheimer's disease.
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The job of caregiver was tough, the hours long, the emotional toll enormous. A.B. watched as Frances disappeared little by little. This slow death left A.B. both immensely sad and incredibly lonely, very typical emotions for a caregiver.

"Caregiving is overwhelming, and there's no reward," says geriatric psychiatrist William Uffner, M.D., medical director for the Older Adult Program at Friends Hospital in Philadelphia. "Sometimes you wind up doing things that you would do for your 6-month- or 3 1/2-year-old child."

But a caregiver of older people doesn't get the positive feedback a child gives—growth, development, a glimpse of a future, Uffner says. Confronting a progressive series of losses is just incredibly disappointing. "And then you don't even have your husband or your wife when it gets too frustrating and you have a meltdown," he says.
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New Web Sites Coordinate Help - NYTimes.com

Image via CrunchBaseby Paula Spann

We’ve all had this experience, haven’t we? A neighbor or friend is struggling through an illness or a family emergency, so we offer our sympathy and help.

“You tell them to call you anytime, 24/7,” said Hal Chapel, an entrepreneur in Maynard, Mass. “You mean it, and they believe it — and it never happens because they’re absorbed in the crisis.”

A Web service Mr. Chapel and his partner introduced five years ago, Lotsa Helping Hands, aims to connect those in need with friends and acquaintances willing to provide rides and meals, do chores or pay visits. About 30,000 communities have coalesced through the site; one currently operating in my town, Montclair, N.J., supports a local woman and her family as she undergoes chemotherapy.

A recent New Old Age post about my dad’s remarkable neighbors, “The Caregiver Next Door,” and the ensuing comments led me to look into this kind of service.
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Disaster Planning Resource Tools for Older Adults and Their Caregivers

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The Hartford and the MIT AgeLab have recently made available online two resources tools to help older adults and their caregivers better prepare for a natural disaster. Both are obtainable at no charge.

The booklet, The Calm Before the Storm: Family Conversations about Disaster Planning, Caregiving, Alzheimer’s Disease and Dementia was developed from research conducted with family caregivers in different parts of the United States. It includes a variety of worksheets, checklists and helpful resources.

To download a copy of the booklet or to order a free printed copy, please go to http://www.thehartford.com/calmbeforethestorm/

The brochure, It Could Happen to Me: Family Conversations about Disaster Planning is based on research conducted with people age 50 and older in different parts of the United States, and interviews with claim adjusters from The Hartford who work with people who have experienced catastrophic losses due to natural disaster.

To download a copy of the brochure or to order a free printed copy, please go to http://www.thehartford.com/talkaboutdisasterplanning/

To learn more about The Hartford Financial Services Group, please go to http://www.thehartford.com/servlet/Satellite?pagename=HIG/Page/LandingPage1&cid=1150850341187&hp=true

To learn more about MIT AgeLab, please go to http://agelab.mit.edu/

Applications Are Being Accepted for the Third Annual Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards

Initiated in 2007, The Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiver Legacy Award is intended to promote promising practices and stimulate innovation in the field of Alzheimer's caregiving by recognizing and rewarding those efforts which lead the way in addressing the needs of Alzheimer's caregivers.

Three awards of $20,000 each will be awarded to nonprofit organizations, government agencies or universities responding to a community need with a program or project which focuses primarily on family/informal caregivers of adults with Alzheimer's disease and related dementias.

One award will be granted in each of three categories:

(1) Creative Expression,
(2) Policy and Advocacy and
(3) Diverse/Multicultural Communities.

The application deadline is 5 p.m. Pacific Time August 12, 2010.

To learn more about this award and to download an application, please go to http://caregiver.org/caregiver/jsp/content_node.jsp?nodeid=2188

Michelle Singletary - Reading up on elder care

A Book Review By Michelle Singletary in the Washington Post
 
WHEN THE TIME COMES - Families With Aging Parents Share Their Struggles And Solutions
By Paula Span, Springboard Press 

Span's book, published last year, isn't a how-to manual as much as it's a how-to-get-through-the-years of caring for an elderly relative. Span writes that her work is a "support group in print." The book tells the stories of about a dozen families faced with becoming caregivers.

"We talk sometimes about a role reversal, the children become the parents, but it's a flawed analogy," Span writes. "Our elders are not children; they don't have to do what we think best. There's no T-shirt that proclaims, 'Because I'm the Daughter, That's Why.' And this passage, unlike child-rearing, will not result in eventual independence."

"When the Time Comes" is a beautifully written, heartfelt narrative filled with facts and advice from experts but also moving stories of care-giving. Span stretches the stories over five chapters that cover the living choices for the elderly -- home care, shared household, assisted living, nursing homes and hospice.

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Ask the Expert: Parental Support and the Law - The New Old Age Blog - NYTimes.com

By CRAIG REAVES (Craig Reaves, immediate past president of the National Academy of Elder Law Attorneys, fields legal questions from New Old Age readers on occasion.)

Q. I’ve heard that there are circumstances where an insurance company or government agency will seek to recoup the costs of an elderly person’s care by going after assets belonging to adult children and their families. I’ve tried to research this online, but haven’t ascertained whether this is an urban legend or whether there’s advice for those of us concerned about doing right by our aging loved ones without ruining our futures in the process.
— D.D., Boston

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Energy Program for San Diego Caregivers with Special Needs | The Caregiver's Corner

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If you are a San Diego caregiver of someone who depends on life support equipment or special environmental conditions, having energy in your home or residence is essential. To help San Diego caregivers and customers with special health needs, SDG&E offers medical baseline allowances that provide additional regulated utility charges at the baseline rate, which can help keep energy costs down.
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