Chair, Advisory Council on Alzheimer’s Research, Care and Services of the National Alzheimer’s Project Act of HHS & Director, Mayo Clinic Alzheimer’s Disease Research Center and Mayo Clinic Study on Aging
The Advisory Council on Alzheimer’s Research, Care and Services of of HHS was created as part of the National Alzheimer’s Project Act. The act, signed into law January 4, 2011, calls for development of a national strategic plan to address the Alzheimer’s crisis and will coordinate Alzheimer’s disease efforts across the federal government.
The 12-member Advisory Council includes patient advocates, caregivers and healthcare providers, will advise U.S. Secretary of Health and Human Services Kathleen Sebelius and help inform the development of the national strategic plan to address Alzheimer’s disease. The Council has three areas of focus – research; clinical care; and long-term services and support
I sat down with Dr. Petersen, asking him for his perspective on the pressing issues facing patients with Alzheimer’s disease, their families and the nation.
Question: How significant is this problem?
Dr. Petersen: Alzheimer’s disease may be the defining disease of our lifetime. If we do not get our hands around it, it may cripple the healthcare system as we know it. We just flat out will not be able to care all of the people who are going to develop this disorder. The people in Washington need to take the bull by the horns and address this problem now.
Question: What is the biggest obstacle patients with Alzheimer’s disease and their families face?
Dr. Petersen: Adequate education and availability of resources. There’s a lot of information out there, but it’s not organized very well. A major obstacle for people is to know where to go to get the right resources to get the care and support, not only for patients and their families, but for practicing physicians as well.
Question: What’s the biggest obstacle that we’re facing as a nation?
Dr. Petersen: The biggest immediate crisis is the growing numbers of people. The biggest risk factor for Alzheimer’s disease is age, and we’re facing an aging society. Baby boomers are just now aging into the period of risk. If something isn’t done on the research side of the house to find treatments that are effective in forestalling this disorder, the system will be absolutely overwhelmed.
Question: As the nation shapes a strategy to counter Alzheimer’s disease, what is your sense of what patients and their families are looking for?
Dr. Petersen: Some organizations, like the Alzheimer’s Association and the Alzheimer’s Foundation of America have conducted town hall meetings to learn what people hope for.
Several things have risen to the top for patients and their families:
- Concern with disorganization of care and services.
- How do you get a diagnosis of Alzheimer’s disease and how do you get an early diagnosis?
Providers caring for patients and researchers studying the disease are concerned about:
- Lack of sufficient numbers of people to participate in clinical trials.
- Need to educate about the value of research associated with Alzheimer’s disease.
Question: What do we need to consider as a country?
Dr. Petersen: The bottom line is that the funding is inadequate across the board. This is the disease that’s going to the cripple the country in the next decade or two. We need to drastically increase the amount of funding for research of Alzheimer’s disease.
Question: Can you cite examples of things being done right to tackle this problem?
Dr. Petersen: 25 states have plans in place to address the problem and seven more states have plans under construction. Those efforts will help inform the National Alzheimer’s Project Act.
On the research front, many studies are being designed to attack the disease earlier. That’s how we will make a serious inroad in reducing the number of people who are afflicted with this disease.
Question: How can we more broadly diffuse the positive things that are happening?
Dr. Petersen: We need the funding to get into these major trials that will involve thousands, maybe tens of thousands of people. We need to quadruple the budget for research of Alzheimer’s disease. We can’t drop back and say we will wait until it’s convenient. It’s never convenient.
Funding of Alzheimer’s disease compared to other diseases.
Question: Why isn’t there the same level of urgency about Alzheimer’s disease compared to other diseases?
Dr. Petersen: We have to educate the general population that Alzheimer’s disease is not a natural consequence of aging. It is disease and we need to do something about it because we can improve those individuals’ quality of life.
To view the complete interview, go to: http://youtu.be/88qf81TKX7A
Support the call to care for the caregivers of those with Alzheimer’s disease.
On Oct. 22, the Alzheimer’s Foundation of America (AFA) released and urged swift implementation of a series of hard-hitting recommendations in its No Time to Waste report to defeat the burgeoning epidemic of Alzheimer’s disease in America.
Central to the report is a call to action urging greater training and support for family caregivers of all demographics across the continuum of care for patients with Alzheimer’s disease.
At this very moment, members of the Congressional Joint Select Committee on Deficit Reduction (the Super Committee) are considering and debating options to curb America’s burgeoning budget deficit. Not only is it unlikely that funding for programs that train and support family caregivers will increase, existing funding to support these vital programs is at risk.
The time is now to let your voice be heard in Congress.
Alzheimer’s disease is a huge problem in America and it’s getting bigger – 5.4 million Americans are living with Alzheimer’s disease. Another American develops Alzheimer’s disease every 69 seconds. In 2050, an American will develop the disease every 33 seconds.
The impacts of Alzheimer’s disease are far-reaching, affecting not only personal health and employment, but also the health and employment status of those who care for patients with Alzheimer’s disease.
- In 2010, 14.9 million family and friends provided 17 billion hours of unpaid care to those with Alzheimer’s and other dementias.
- The economic value of the unpaid care provided to those with Alzheimer’s and other dementias totaled $202.6 billion in 2010.
- More than 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high; one-third report symptoms of depression.
No Time to Waste describes the profound challenge of caring for a person with Alzheimer’s disease.
Caring for a person with Alzheimer’s disease is often very difficult. Many caregivers experience high levels of emotional stress and depression and often there is negative impact on the health, employment, income and financial security. Many caregivers get caught in a difficult spiral of negative consequences. They are forced to take time off from work, forgo promotions and maybe event drop out of the workforce altogether to care for relatives. Consequently, they work and earn less, which reduces the Social Security and pension benefits they receive.
The report claims are born out in the results of an October 2010 study by the Alzheimer’s Association.
The report found that the majority of men and women surveyed made substantial changes to their work schedules because of caregiving responsibilities. In the survey of caregivers:
- 61 percent of women and 70 percent of men said they had to go in late, leave early or take time off ;
- 21 percent of women and 18 percent of men had to take a leave of absence.
Business productivity losses related to family caregiving in the United States have been estimated as high as $33 billion per year.
But while the problem of Alzheimer’s disease grows and its impact on the health and employment of caregivers becomes more profound, funding the programs best suited to meet caregivers’ needs are at risk.
No Time to Waste calls on Congress to “fully fund existing programs that seek to reduce the family caregiver burden and reduce institutionalization.”
Lifespan Respite brings together federal, state and local resources and funding to provide temporary relief for caregivers. A Minnesota Board of Aging program is in place to enhance listings, train community members as “respite ambassadors” and increase respite service choices. These are two examples of programs that are having a profound and favorable impact for caregivers.
The challenge to sustain funding for these and other impactful programs midst the Super Committee debate is profound.
In an opinion piece posted on the Health Affairs blog, Sean Coffey, a policy specialist at the National Center on Caregiving at Family Caregiver Alliance, points out that two-thirds of laws supporting caregivers are never enacted. Money (lack thereof) and inertia in thinking about new ways of providing care are among the primary reasons.
Last Thursday, 31 national organizations stepped boldly forward to respectfully request that the Joint Select Committee of Congress preserve vital funding for programs supporting caregivers who provide $450 billion in unpaid care every year. The Alzheimer’s Foundation of America was among those organizations who lent their voice to the growing chorus on this critical issue.
Contact your Senator or member of Congress. Let your voice be heard today.
On Sept. 13, 2011 televangelist Pat Robertson responded on-air to a question posted in the on-line chat room of his 700 Club broadcast.
“Andreas” wrote that his friend’s wife suffered from Alzheimer’s. She didn’t recognize him anymore and that his “wife as he knew her was gone.” He was starting to see other women. Andreas asked for Robertson’s help, not knowing what to tell his friend.
“I know it sounds cruel, but he should divorce her and start all over again,” said Robertson.
Robertson’s response unleashed a wave of fury and new questions about the long-term role of family caregivers for patients with Alzheimer’s disease.
- “Robertson’s advice stands in stark contrast with most theologians and ethicists who would advise fidelity,” blogged Tobin Grant in Christianity Today.
- “Many people develop new relationships while caring for a spouse in the last stages of Alzheimer’s, but advising them to seek a divorce “strikes me as ludicrous,” Sandra Weintraub, professor of neurology and psychiatry at the Alzheimer’s Center of the Northwestern University School of Medicine.
Robertson’s advice runs counter to what experts identify as the important role of family in caring for patients.
- Laura Gitlin, Ph.D., Director, Jefferson Center for Applied Research on Aging and Health (CARAH), at Thomas Jefferson University in Philadelphia suggests that engaging family members in the therapeutic process is critical to success – “family, friends or neighbors should be involved in daily support or direct care.”
- In 2001, Jiska Cohen Mansfield wrote in Geriatric Times that “it’s important for patients to maintain the sense of identity they may have found through work and family roles.”
Bob Youngblood of Florida believes balance is possible.
It’s a balance that he says fulfills his responsibilities to his wife, but also to himself.
Teepa Snow, a 31-year veteran of the dementia care field, offers simple advice to caregivers:
- “Truth-based answers to Alzheimer’s patients questions are not helpful;
- Listen more;
- Allow patients to talk, don’t try to correct;
- Respect patients’ personal space.”
The numbers from the Alzheimer’s Association are staggering. The stakes on this issue are high and getting higher. In the United States:
- 5.4 million Americans have Alzheimer’s disease;
- The number is expected to grow to 16 million by 2050;
- Another American develops Alzheimer’s disease every 69 seconds.
And in Minnesota:
Regardless of your perspective, one thing is certain, long-term solutions to support the caregiving needs of America’s burgeoning population of Alzheimer’s disease patients must be found.
Entitled “No Time to Waste,” the report urges a “bold but practical” approach and calls for formulating solutions within—as well as outside of—current government programs to ultimately “defeat” Alzheimer’s disease.
AFA’s recommendations for research, clinical care and long-term care come as national experts are examining what to include in an “integrated national plan” as mandated under the new National Alzheimer’s Project Act (NAPA), and as the incidence of the brain disorder in the United States is expected to explode by mid-century.
To effect long-lasting change, the report urges wide-scale public awareness campaigns, including messaging to drive earlier detection and to “shift the focus from fear to acceptance of the disease.”
Other calls for action include: a substantial investment in research toward the prevention, treatment, care and cure of Alzheimer’s disease; additional dementia training and reimbursement for primary care clinicians; and greater training and support for family caregivers of all demographics across the continuum of care.
Read the full report.
Has your life been touched by a diagnosis of Alzheimer’s disease or another dementia-related illness?
An Alzheimer’s or dementia-related diagnosis can be devastating. There are many questions and often-times, the answers are hard to find. As a caregiver, you’re left searching for answers; seeking treatment options and grappling for insight on how best to care for the person you love and yourself.
mnalzheimersupdate provides the latest news and credible information for treatment; care; and caregiving for those with Alzheimer’s disease and other dementia-related illnesses. It’s all available in a single, easy to access site and in an easy to understand format that meets your basic needs as a caregiver.
Join the conversation today at mnalzheimersupdate .
by: Nataly Rubinstein
When you become a caregiver for a loved one with Alzheimer’s disease or dementia, your life changes drastically. From often-repeated questions to bizarrely compulsive behaviors to personality changes, you must deal with many bewildering, frustrating, and worrying behaviors…and you must also face the knowledge that your loved one’s condition is degenerative (and ultimately fatal).
No two cases of dementia are the same, but many do share similar characteristics, and there are practical ways to deal with so-called “problem” behaviors. Here are five of them, as well as how you can most effectively respond:
Problem: Compulsive Behaviors
“Dad keeps taking everything out of his wallet and putting it back in.”
Your loved one may constantly check to see if the door is locked, empty or rearrange wallets or purses, pack and repack clothing, etc. These things are all manifestations of anxiety. The patient knows he has something important to remember but has forgotten what it was…and this causes his repetitive behaviors. The “big four in anxiety” are the basics for all of us: food, shelter, clothing, and family, and it’s not surprising that many compulsive behaviors revolve around these issues.
Solutions: First, ignore the behavior and remember that although it seems strange to you, it’s probably not doing any real harm. Giving cease-and-desist advice to your loved one will only spark stress and arguments. Plus, if a behavior isn’t reinforced, it may stop. In general, do all you can to help the patient cope with his anxiety. Speak in a calm, gentle voice, and don’t be afraid to touch or hug.
“My wife asks me the same question over and over again, even though I answered it—yet again—not five minutes ago.”
Alzheimer’s and dementia are diseases of forgetting. As these illnesses progress, patients live increasingly “in the moment,” and they lose the ability to think and process information. For someone in this situation, repetition—whether it’s asking a question, stating a fact, or telling a story—is comforting.
Solutions: It’s usually best for everyone if you answer the same question or listen to the same story again and again. It doesn’t hurt you, it helps your loved one, and it can prevent much more serious episodes of agitation, confusion, or aggression.
“My husband walked out the door and was halfway down the street before I noticed!”
When people wander—whether they’re experiencing memory loss or not—it’s usually because they’re looking for a safe or comfortable place. Your loved one might be seeking a bathroom, a person or place from his past, or relief from boredom or pain. (Or he may have simply become confused while getting the mail.)
Solutions: Whether your loved one has a history of wandering or not, buy him a Safe Return necklace or bracelet through the Alzheimer’s Association. You might also change locks, install a security system in the patient’s home, or make use of baby gates. Again, making your loved one feel secure is paramount, so don’t call attention to any changes you may make in the living environment. And pay special attention to making sure that he doesn’t wander away during outings.
“My father keeps talking to someone who isn’t there.”
A hallucination is a misperception of reality, often sparked by changes in the brain that cause the patient to see, hear, feel, or smell something that no one else does. I recall a client, Max, who loved to care for and play with his cat, Morris. The only problem was, Morris didn’t exist…and Max’s hallucination was driving his wife, Alice, crazy!
Solutions: In the case of Max and Morris, I advised Alice to change her attitude about the imaginary cat. Instead of letting Morris upset her, Alice realized that the cat wasn’t hurting anyone and was making Max happy—plus, he didn’t shed, make noise, or make a mess. If your loved one’s hallucinations aren’t doing any harm, do your best to live with them. And warn visitors in advance so that they don’t inadvertently exacerbate the situation.
“My wife gets agitated and starts trying to find her own mother every day in the late afternoon.”
Many Alzheimer’s and dementia patients perceive their environments differently as the light begins to fade toward sundown—and this sensory confusion can cause them to become anxious, paranoid, or aggressive. Understandably, sundowning is frightening for the person whose world seems to be becoming more menacing by the minute. In her eyes, the light pole outside the living room might become a threatening intruder, and she will begin to look for a safe place.
Solutions: There’s very little you can do to convince your loved one that the reality she’s experiencing isn’t accurate once she has worked herself into an agitated state. However, you can take steps to decrease or avert sundowning’s effects. Stick closely to a daily routine, and start turning on lights mid-afternoon. Also, encourage your loved one to be as active as possible during the day (and thus tired toward evening) and to sit in the sunlight for at least 20 minutes to reset circadian rhythms.
Remember, you can’t change the progression of the disease, but you can take steps to minimize the stress both of you feel as a result of behavior changes. And while many of these changes can be difficult to deal with, that doesn’t mean all the joy is gone. You can have a positive impact on the patient’s quality of life—and you can definitely still enjoy special moments with your loved one.
Nataly Rubinstein is a licensed clinical social worker and a certified geriatric care manager specializing in Alzheimer’s disease and other dementias. She is the author of Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide (Two Harbors Press, http://www.AlzheimersCareConsultants.com).
As part of my coursework at the University of Minnesota’s Humphrey School of Public Affairs, Social Media: Engaging Democracy and Communities On-line, sharing this summary of national resources tracking scientific research developments; support groups and the latest news associated w/ Alzheimer’s Disease.