We’re Young, We’re Poor, & We Need a Cure. Our Lives Depend on It

By my friend and fellow young advocate, Kathy Ritchie

As I write this blog, I’m trolling Twitter. Just seeing what’s out there in the way of caregiver support, resources, news, etc, etc, etc. Turns out, there’s a lot shaking in our world. A quick scroll on my feed shows Tweets about everything from incontinence and nursing homes to tips on how to be an organized caregiver (“organized” and “caregiver:” two words that don’t really go together). Lots of information. Some of it useful; most of it scary.

(No, you don’t and won’t have enough money to grow old).

While you’ll absolutely find information about caregiving or being a caregiver, much of what’s out there is geared towards Baby Boomers… because let’s face it, Baby Boomers are a hot commodity right now.

Why? They’re rich and they’re going to get sick.

As for the under 40 set, well, we’re sort of preoccupied with paying off our student loans, buying our first home (or drowning in it, as the case may be), finding our dream job, finding Mr. or Ms. Right, making babies, having babies and/or getting divorced.

You know what else we’re doing? We’re NOT saving. Saving for the day we develop a long term illness like dementia.

That said, we’re about as undesirable as they come. And you should be pissed off about that. After all, we’re not safe from Alzheimer’s disease or other dementias… there are no cures, no means of prevention. NADA.

Still not convinced? Just Google, “Alzheimer’s and 2050.”

This is the quiet before the Tsunami.

Here are a few things you should know:

• Alzheimer’s disease is just one of several types of dementias (my mom has frontotemporal dementia).
• HIV/AIDS was once considered a death sentence; today it’s a “manageable disease.” That’s because a lot of money was thrown into the research bucket and antiviral drugs were developed.
• Medicare will NOT pay for nursing home/assisted living care.
• You can’t afford to grow old. According to Genworth’s 2012 Cost of Care Survey, which I found in an online article on Next Avenue,  “one year of long-term care ranges from $39,600 for an assisted living facility to $81,030 for a private room in a nursing home.” (source: Next Avenue; Genworth)
• Alzheimer’s disease is the sixth-leading cause of death in the U.S. and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed. (source: 2012 Alzheimer’s Association, Facts & Figures report)
• Have you ever changed an adult’s diaper? More than 15 million Americans provide unpaid care valued at $210 billion for persons with Alzheimer’s and other dementias.  (source: 2012 Alzheimer’s Association, Facts & Figures report)
• In 2012, the direct costs of caring for those with Alzheimer’s or other dementias to American society will total an estimated $200 billion, including $140 billion in costs to Medicare and Medicaid. Unless something is done, the care costs of Alzheimer’s and other dementias will soar from $200 billion to a projected $1.1 trillion (in today’s dollars) by 2050.  (source: 2012 Alzheimer’s Association, Facts & Figures report)

What can you (reasonably) do?

• Become an advocate. Make your voice heard.
• Get information: Call Banner Alzheimer’s Institute, the Alzheimer’s Associationor the Association for Frontotemporal Degeneration
• Call your Representative and make an appointment to tell your story (remember, politicians are technically supposed to work for you).
• Attend local town halls. 
• Join YAAA! – Young Adults for Alzheimer’s Awareness!
• Walk to End Alzheimer’s
• Write an editorial for your local newspaper.
• Connect with others via social media (Facebook, Twitter), support groups, or your local Alzheimer’s Association.
• Meet new people at the Alzheimer’s Forum in Washington DC.
• Participate in clinical trials.

Here’s the myth: Alzheimer’s disease and other dementias are diseases old people get. Here’s the truth: People in their 30s, 40s and 50s are developing dementia. Here’s the other truth: This disease will touch your life one day, if it hasn’t already.

Dementia is not an old person’s disease.

www.mydementedmom.com 

Giving Alzheimer’s Patients Their Way, Even Chocolate

Todd Heisler/The New York Times

PHOENIX — Margaret Nance was, to put it mildly, a difficult case. Agitated, combative, often reluctant to eat, she would hit staff members and fellow residents at nursing homes, several of which kicked her out. But when Beatitudes nursing home agreed to an urgent plea to accept her, all that changed.

Disregarding typical nursing-home rules, Beatitudes allowed Ms. Nance, 96 and afflicted with Alzheimer’s, to sleep, be bathed and dine whenever she wanted, even at 2 a.m. She could eat anything, too, no matter how unhealthy, including unlimited chocolate. 

And she was given a baby doll, a move that seemed so jarring that a supervisor initially objected until she saw how calm Ms. Nance became when she rocked, caressed and fed her “baby,” often agreeing to eat herself after the doll “ate” several spoonfuls. 

Dementia patients at Beatitudes are allowed practically anything that brings comfort, even an alcoholic “nip at night,” said Tena Alonzo, director of research. “Whatever your vice is, we’re your folks,” she said. 

Once, Ms. Alonzo said: “The state tried to cite us for having chocolate on the nursing chart. They were like, ‘It’s not a medication.’ Yes, it is. It’s better than Xanax.”

It is an unusual posture for a nursing home, but Beatitudes is actually following some of the latest science. Research suggests that creating positive emotional experiences for Alzheimer’s patients diminishes distress and behavior problems. 

In fact, science is weighing in on many aspects of taking care of dementia patients, applying evidence-based research to what used to be considered subjective and ad hoc. 

With virtually no effective medical treatment for Alzheimer’s yet, most dementia therapy is the caregiving performed by families and nursing homes. Some 11 million people care for Alzheimer’s-afflicted relatives at home. In nursing homes, two-thirds of residents have some dementia.

Caregiving is considered so crucial that several federal and state agencies, including the Department of Veterans Affairs, are adopting research-tested programs to support and train caregivers. This month, the Senate Special Committee on Aging held a forum about Alzheimer’s caregiving. 

“There’s actually better evidence and more significant results in caregiver interventions than there is in anything to treat this disease so far,” said Lisa P. Gwyther, education director for the Bryan Alzheimer’s Disease Research Center at Duke University. 

The National Institute on Aging and the Administration on Aging are now financing caregiving studies on “things that just kind of make the life of an Alzheimer’s patient and his or her caregiver less burdensome,” said Sidney M. Stahl, chief of the Individual Behavioral Processes branch of the Institute on Aging. “At least initially, these seem to be good nonpharmacological techniques.”

Techniques include using food, scheduling, art, music and exercise to generate positive emotions; engaging patients in activities that salvage fragments of their skills; and helping caregivers be more accepting and competent. 

Changing the Mood

Some efforts involve stopping anti-anxiety or antipsychotic drugs, used to quell hallucinations or aggression, but potentially harmful to dementia patients, who can be especially sensitive to side effects. Instead, some experts recommend primarily giving drugs for pain or depression, addressing what might be making patients unhappy. 

Others recommend making cosmetic changes to rooms and buildings to affect behavior or mood.

A study in The Journal of the American Medical Association found that brightening lights in dementia facilities decreased depression, cognitive deterioration and loss of functional abilities. Increased light bolsters circadian rhythms and helps patients see better so they can be more active, said Elizabeth C. Brawley, a dementia care design expert not involved in the study, adding, “If I could change one thing in these places it would be the lighting.” 

Several German nursing homes have fake bus stops outside to keep patients from wandering; they wait for nonexistent buses until they forget where they wanted to go, or agree to come inside.

And Beatitudes installed a rectangle of black carpet in front of the dementia unit’s fourth-floor elevators because residents appear to interpret it as a cliff or hole, no longer darting into elevators and wandering away. 

“They’ll walk right along the edge but don’t want to step in the black,” said Ms. Alonzo, who finds it less unsettling than methods some facilities use, bracelets that trigger alarms when residents exit. “People with dementia have visual-spatial problems. We’ve actually had some people so wary of it that when we have to get them on the elevator to take them somewhere, we put down a white towel or something to cover it up.” 

When elevator doors open, Beatitudes staff members stand casually in front, distracting residents with “over-the-top” hellos, she said: “We look like Cheshire cats,” but “who’s going to want to get on the elevator when here’s this lovely smiling person greeting you? It gets through to the emotional brain.” 

Six minutes later, participants had trouble recalling the clips. But 30 minutes later, emotion evaluations showed they still felt sad or happy, often more than participants with normal memories. The more memory-impaired patients retained stronger emotions. 

Justin Feinstein, the lead author, an advanced neuropsychology doctoral student, said the results, being studied with Alzheimer’s patients at Iowa and Harvard, suggest behavioral problems could stem from sadness or anxiety that patients cannot explain. 

“Because you don’t have a memory, there’s this general free-floating state of distress and you can’t really figure out why,” Mr. Feinstein said. Similarly, happy emotions, even from socializing with patients, “could linger well beyond the memories that actually caused them.” 

One program for dementia patients cared for by relatives at home creates specific activities related to something they once enjoyed: arranging flowers, filling photo albums, snapping beans. 

“A gentleman who loved fishing could still set up a tackle box, so we gave him a plastic tackle box” to set up every day, said the program’s developer, Laura N. Gitlin, a sociologist at Thomas Jefferson University in Philadelphia and newly appointed director of a new center on aging at Johns Hopkins University. 

After four months, patients seemed happier and more active, and showed fewer behavior problems, especially repetitive questioning and shadowing, following caregivers around. And that gave caregivers breaks, important because studies suggest that “what’s good for the caregiver is good for the patient,” Professor Gwyther said. 

Aiding the Caregiver

In fact, reducing caregiver stress is considered significant enough in dementia care that federal and state health agencies are adopting programs giving caregivers education and emotional support.

One, led by Mary S. Mittelman, a New York University dementia expert, found that when people who cared for demented spouses were given six counseling sessions as well as counselors whom they could call in a crisis, it helped them handle caregiving better and delayed by 18 months placing patients in nursing homes. 

“The patient did not have fewer symptoms,” Dr. Mittelman said. “It was the caregiver’s reaction that changed.” 

The Veterans Affairs Department is adopting another program, Resources for Enhancing Alzheimer’s Caregiver Health, providing 12 counseling sessions and 5 telephone support group sessions. Studies showed that these measures reduced hospital visits and helped family caregivers manage dementia behaviors. 

“Investing in caregiver services and support is very worthwhile,” saving money and letting patients remain home, said Deborah Amdur, chief consultant for care management and social work at the Veterans Affairs Department. 

Beatitudes, which takes about 30 moderate to severe dementia sufferers, introduced its program 12 years ago, focusing on individualized care. 

“In the old days,” Ms. Alonzo said, “we would find out more about somebody from their obituary than we did when they were alive.” 

The dementia floor was named Vermillion Cliffs, after colorfully layered rock formations formed by centuries of erosion, implying that, “although weathered, although tested by dementia, people are beautiful” and “have certain strengths,” said Peggy Mullan, the president of Beatitudes.

The facility itself is institutional-looking, dowdy and “extremely outdated,” Ms. Mullan said.

“It’s ugly,” said Jan Dougherty, director of family and community services at Banner Alzheimer’s Institute in Phoenix. But “they’re probably doing some of the best work” and “virtually have no sundowning,” she said, referring to agitated, delusional behavior common with Alzheimer’s, especially during afternoon and evening. 

Beatitudes eliminated anything potentially considered restraining, from deep-seated wheelchairs that hinder standing up to bedrails (some beds are lowered and protected by mats). It drastically reduced antipsychotics and medications considered primarily for “staff convenience,” focusing on relieving pain, Ms. Alonzo said. 

It encouraged keeping residents out of diapers if possible, taking them to the toilet to preserve feelings of independence. Some staff members resisted, Ms. Alonzo said, but now “like it because it saves time” and difficult diaper changes. 

Family members like Nancy Mendelsohn, whose mother, Rose Taran, was kicked out of facilities for screaming and calling 911, appreciate it. “The last place just put her in diapers, and she was not incontinent at all,” Ms. Mendelsohn said. 

Ms. Alonzo declined to pay workers more to adopt the additional skills or night work, saying, “We want people to work here because it’s your bag.” 

Finding Favorite Things

For behavior management, Beatitudes plumbs residents’ biographies, soothing one woman, Ruth Ann Clapper, by dabbing on White Shoulders perfume, which her biographical survey indicated she had worn before becoming ill. Food became available constantly, a canny move, Ms. Dougherty said, because people with dementia might be “too distracted” to eat during group mealtimes, and later “be acting out when what they actually need is food.” 

Realizing that nutritious, low-salt, low-fat, doctor-recommended foods might actually discourage people from eating, Ms. Alonzo began carrying chocolate in her pocket. “For God’s sake,” Ms. Mullan said, “if you like bacon, you can have bacon here.” 

Comforting food improves behavior and mood because it “sends messages they can still understand: ‘it feels good, therefore I must be in a place where I’m loved,’ ” Ms. Dougherty said.

Now, when Maribeth Gallagher, dementia program director for Hospice of the Valley, which collaborates in running Beatitudes's program, learns someone’s favorite foods, “I’m going to pop that on your tongue, and you’re going to go ‘yum,’ ” she said. “Isn’t that better than an injection?”

Beatitudes also changed activity programming. Instead of group events like bingo, in which few residents could actually participate, staff members, including housekeepers, conduct one-on-one activities: block-building, coloring, simply conversing. State regulators initially objected, saying, “Where’s your big group, and what you’re doing isn’t right and doesn’t follow regulations,” Ms. Alonzo said. 

Ms. Mullan said, “I don’t think we ever got cited, but it was a huge fight to make sure we didn’t.”

These days, hundreds of Arizona physicians, medical students, and staff members at other nursing homes have received Beatitudes’ training, and several Illinois nursing homes are adopting it. The program, which received an award from an industry association, the American Association of Homes and Services for the Aging, also appears to save money. 

Arlene Washington’s family moved her to Beatitudes recently, pulling her from another nursing home because of what they considered inattentive and “improper care,” said her husband, William. Mrs. Washington, 86, was heavily medicated, tube fed and unable to communicate, “like she had no life in her,” said Sharon Hibbert, a friend. 

At Beatitudes, Dr. Gillian Hamilton, administrative medical director, said she found Mrs. Washington “very sedated,” took her off antipsychotics, then gradually stopped using the feeding tube. Now Mrs. Washington eats so well she no longer needs the insulin she was receiving. During a recent visit, she was alert, even singing a hymn. 

That afternoon, Ms. Nance, in her wheelchair, happily held her baby doll, which she named Benjamin, and commented about raising her sons decades ago. 

Ms. Alonzo had at first considered the doll an “undignified” and demeaning security blanket. But Ms. Gallagher explained that “for a lot of people who are parents, what gives them joy is caring for children.” 

“I was able,” Ms. Gallagher said, “to find Margaret’s strength.” 

Ms. Gallagher said she learned when approaching Ms. Nance to “look at her baby doll, and once I connect with the doll, I can look at her.” 

She squatted down, complimented Benjamin’s shoes, and said, “You’re the best mom I know.”

Ms. Nance nodded earnestly. 

“It’s good to know,” Ms. Nance said, “that somebody knows that you care.”

Early Burdens: Eldercare Falls on Young Shoulders

Suzette Armijo, 30, of Phoenix, right, oversees care of her 86-year-old grandmother, Elizabeth Armijo, left, a retired National Park Service ranger. (Courtesy Suzette Armijo)

By JANE E. ALLEN (@JaneEAllenABC) , ABC News Medical Unit

May 4, 2012

At 30, Suzette Armijo cares for her widowed 86-year-old grandmother, a retired National Park Service ranger in the final stages of Alzheimer's disease, while holding down a fulltime job, a part-time job and raising a 4-year-old son.

"This was nothing that I had planned for," says Armijo, who moved her grandmother Elizabeth Armijo into a nearby six-bed assisted living home because veterans' benefits "wouldn't pay for her to live with me." Still, she says, "I have to do everything for her, aside from her bathing. There's always something new going on with her medically."

Besides her fulltime marketing job with a Phoenix retirement community, Armijo supplements her income with outside consulting because "I do have to pay a portion of Grandma's bills."

 

Although she doesn't know anyone else her age doing what she's doing, she comes to her caregiving out of love for a woman who took care of so many others: "I don't feel torn because I know this is the way my Grandma was," Armijo said Thursday. "She took care of her parents. She took care of my grandfather. She took care of my little brother who had cancer when he was little. I grew up seeing that."

Suzette Armijo is among a generation of young adult caregivers, the majority of whom are women, navigating tough turf without a roadmap. Few of their contemporaries shoulder equivalent responsibilities. Members of the so-called sandwich generation, squeezed by parental caregiving and child-rearing, are a good 20 to 30 years older. As they try to tap into resources to help an ailing grandmother, Mom or Dad, these 20-somethings and 30-somethings are often on a lonely road. Armijo said she's drawn some of her strength from establishing a local young advocates group through the Alzheimer's Association. "You have to find something for yourself, otherwise you lose your mind."

Internet sites like AgingCare.com, which connects caregivers of elderly parents with others, may help this younger caregiving cadre find encouragement, empathy and tips on locating services.

"Other caregivers jump in and help," said Richard Nix, AgingCare.com's 49-year-old executive vice president. The National Stroke Association has launched a free, private Careliving Community with "more than 2,000 caregivers right now," said Taryn Fort, a spokeswoman for the Centennial, Colo.-based organization. Support groups for young caregivers have sprouted within some local chapters of the Alzheimer's Association, said Toni Williams, a spokeswoman for its public policy office in Washington, D.C.
Even the best-laid plans among 20-somethings can be thrown off course by a loved one's catastrophic illness and disability. After graduating from Purdue University in Indiana last May, Lauren Erickson spent six weeks in a competitive pre-medical enrichment program in Cincinnati. In September, she moved to Minneapolis to begin work as a hematology-oncology clinic assistant at Children's Hospitals and Clinics of Minnesota while studying for the Medical College Admission Test, which she hoped to take May 12.


Lauren Erickson, 23, left, moved back home to Prescott, Wis., from Minneapolis, to help care for her dad Jim Erickson, 71, right, following his stroke in March.

 

But on St. Patrick's Day, her father Jim Erickson, 71, suffered a massive stroke at home in Prescott, Wis., which left him unable to speak or move his right side. Because Erickson's mother, 61, was still recuperating from a Feb. 2 hip replacement, the couple's only child stepped in.

"I had to move home and help my Mom," Erickson, 23, said. As a result of new demands on her time, including a significant daily commute to Minneapolis, "I haven't opened an MCAT book or anything," Erickson said. She signed up to take the MCAT in July, but said her taking the test then will depend upon how her father is faring.

Even with a "very helpful" boyfriend and some free counseling through work, Erickson keeps wishing she could do more for her mother. "Through this whole process, I couldn't really break down or cry in front of her. I had to be the strong one." Still, she feels more rushed than ever about achieving her many life goals, including med school admission, "so that I can have my Dad present for all those events."
Having her father David Jenkins nearby was the only solution that Tara Leigh Adams, 28, found acceptable after he suffered a major stroke in November 2010. Adams, married and teaching second grade in Greenville, S.C., raced to her hometown of Charlottesville, Va., to help her 65-year-old father, a widower since Adams was a child.


Tara Leigh Adams, 28, right, a wife, expectant mother and second-grade teacher, moved her father David Jenkins, 65, seated, from Virginia.
 
"I think from the start I kind of, in my heart, knew that was just the way. I always knew he had to be near me," said Adams, who is expecting her first child in October. Aides help her father while she's at work, but once she walks back in the front door, she takes over everything, including getting him to the restroom.
Friends just don't understand, she said. "A lot of people my age look and say 'why do you do this? Why not a nursing home?'"

But for Adams, "there's no other option for me that would ever be as good."

Adams, who calls her husband the "rock that I lean on" said there is no substitute for "waking up and telling my Dad how much I love him in the morning."

Alzheimer's and the Importance of Early Detection

Alzheimer's disease is one of the top 10 diseases Americans die from each year, but it is the only one on that list that is expanding as the other causes of death are declining. Alzheimer's disease is a degenerative brain disease and the most common form of dementia.

"Alzheimer's is becoming a more common cause of death as the populations of the United States and other countries age," notes the Alzheimer's Association. "While other major causes of death continue to experience significant declines, those from Alzheimer's continue to rise."

One reason for this difference is that the other leading fatal illnesses are preventable, such as stroke and heart disease, but Alzheimer's cannot be prevented with lifestyle changes. According to the Alzheimer's Association, preliminary data from between 2000 and 2008 showed that deaths attributed to Alzheimer's increased 66 percent, while those attributed to the No. 1 cause of death, heart disease, decreased by 13 percent.

Such statistics make the latest Alzheimer's research so vital for those who suspect they may get the disease, those already suffering from it and their friends and family, who may provide some level of in-home caregiver support during the long course of the disease.

Some of the biggest news about Alzheimer's currently is the importance of early detection.

"Biological changes associated with Alzheimer's disease are thought to begin 10 to 15 or perhaps 20 years before an individual displays symptoms," states Dr. Heather Snyder, senior associate director of medical and scientific relations at the Alzheimer's Association. "But there is no single generally accepted way to identify the disease in its earliest stages -- before symptoms are evident. At the same time, Alzheimer's therapies are in development that may be able to slow or stop the progression of the disease."

There are efforts underway to update the diagnostic criteria in a variety of ways, including biomarker measures. This spring, the National Institute on Aging (NIA) and the Alzheimer's Association published new diagnostic criteria guidelines for Alzheimer's disease in Alzheimer's and Dementia: The Journal of the Alzheimer's Association.
You might ask: If the disease cannot currently be stopped or cured, what difference does early detection make?
"The benefits of early detection are many," says Beth Kallmyer, senior director of constituent services at the Alzheimer's Association. "People who are diagnosed early can participate in the planning of their future -- they can talk to their families about advanced directives, how they want to have their finances handled, what they want to have happen when they can't drive anymore."

Not only does this allow the person with Alzheimer's disease to feel empowered, Kallmyer says, but it's a huge relief to their caregivers and loved ones who otherewise may have to make decisions under a great deal of stress later, when the disease is in its advanced stages.

We recently posted an article on Homewatch Caregivers that pulls from the Alzheimer's Association's own 10 Signs of Alzheimer's list. There is a distinct difference between the signs of normal aging and early Alzheimer's disease. For example, someone may answer the phone and simultaneously put down their keys, then not be able to find them a few minutes later. A normal aging brain will retrace their steps and remember the moment that they answered the phone, whereas an individual with Alzheimer's disease will not remember the phone call or be able to retrace their steps.

Kallmyer points out that the role of an in-home caregiver to someone with Alzheimer's is unique in the length of the disease and increased need. "It starts with helping with memory aides and then ends when the person with Alzheimer's can do nothing for themselves," she says.

Another benefit to early detection of Alzheimer's disease is that the individual can decide if they want to be part of future Alzheimer's research by signing up to participate in clinical trials. "When somebody has a fatal illness, clinical trials can be a great way for them to feel like they are making a change," Kallmyer says. "They might feel like they are making a difference for their kids and grandkids."

Ultimately, with hopes that there will be treatments for Alzheimer's disease, the time to intervene will be in the earliest stages of the brain disease. "This approach envisions what is now common practice in heart disease," says Dr. Snyder. "Where early signs of risk -- for example, in genetic markers or in blood cholesterol and/or blood pressure levels -- can be treated to reduce the chances of heart attack or stroke later on."

Dr. Snyder said there is a lot more research to be done on Alzheimer's disease. "There are many unanswered questions in Alzheimer's disease," she says. "We do not yet know the causes of the disease, we do not know risk factors associated with Alzheimer's disease."

By Leann Reynolds

Geriatric Case Managers: A Valuable Resource for Families Caring for An Aging Relative

As a geriatric care manager, I receive inquiries from family members who are caring for a relative, and “don’t know quite why I am calling but I was told you could help me”. Or sometimes I receive calls from family members who admit to needing help but ask “What exactly do you do?”

Here is a brief description of geriatric care managers and how they might be helpful to you and your aging relative:

Who are geriatric care managers?

Typically a geriatric care manager (GCM) is a social worker, counselor, gerontologist or nurse. Many GCMs have their own private practice, and some work for an agency such as the Council on Aging, Jewish or Catholic Social Services, etc. Geriatric care managers can help caregivers and older adults, whether they live close by or a long distance away with the multitude of issues related to an older relative’s and caregiver’s personal well being.

What do Geriatric Care Managers do?

The scope of practice can vary from GCM to GCM, but generally speaking, most or all of the following services are offered.

Geriatric care managers:

LISTEN. Before a geriatric care manager knows how she can help you, it is important to hear your story: your parent’s health and situation, how you are doing and what is concerning you. During your initial, as well as on-going conversations, GCMs listen to what you have to say. They value your input. They ask questions to make sure they understand your unique situation and how they can help.

Conduct an assessment of your relative’s health, safety, capabilities and needs. In my practice, I try to conduct assessments in the older person’s home, so she can feel more relaxed and in control. A casual conversation blended with some direct questions and observations can give me a good idea of the abilities and needs of the person. An assessment can take 2 hours or more depending on the complexities of the situation.

Report the results of the assessment, including recommendations for planning for the near future and beyond. Families often use this tool to make sure everyone has the same information about what is happening, what needs to be done, and who is going to do what needs to be done.

Coordinate and oversee services that your relative is receiving. Having a professional involved who is experienced in working with community and health care providers and ‘speaks their language’, can not only be efficient but can ensure that quality services are delivered. For example, if your relative could benefit from some part time help in the home, a GCM can schedule caregivers (or companions) orient them to what is needed and then work with you to make sure the level of assistance is being given. Some GCMs employ caregivers, others do not.

Advocate for what you and your relative need with doctors and other health care providers, attorneys, bankers, and community services and residential care settings. I have several clients who live in residential care settings, a distance from their adult children. I am not only able to report how their relative is doing when I visit, but I am able to meet with the managers about any changes that need to take place to maintain my client’s health, comfort and safety.

Support the older adult and family through transitions such as bringing help in the home, attending an adult day center, or moving from home to a residential care setting. These decisions and changes can be made easier with the guidance and support of an experienced care manager.

Facilitate family meetings. When a parent’s health, memory or situation changes, family meetings can be an opportunity for families to get together to talk about the present situation and how best to help the parent or the caregiver. Family meetings can also be a time for a geriatric care manager to educate families about a disease, present and describe services that can help, and answer any questions. If a parent is reluctant to accepting help, or the family cannot come up with a plan that everyone can agree to, a non-partial facilitator can help.

Act as a resource person and make referrals to services that can help now and in the future.

Geriatric care managers are committed to ensuring that families have the best quality of life possible, given their individual situation.

How much do geriatric care charge for their services?

The fees for private geriatric care managers vary from state to state and region to region. Many GCMs have a set hourly fee; some require a deposit for services when a contract is signed. Hours are then billed at the hourly rate and deducted from the deposit. It is best to ask up-front what the billing rate is, what it includes and if a contract needs to be signed before services can be started. Keep in mind that most care managers will work with you on an ‘as-needed’ basis, for a specific length of time or as long as needed.

How do I find a geriatric care manager?

Members of the National Association of Professional Geriatric Care Managers (NAPGCM) can be found on http://www.caremanager.org/ or by calling 1-521-881-8008. Questions to ask when you interview GCMs are posted on the site. To find GCMs that are not members of the National Association, call your local Council on Aging.

By Laurie White

Changing the Trajectory of Alzheimer's Disease - News Release

ALZHEIMER’S DISEASE TO COST UNITED STATES

$20 TRILLION OVER NEXT 40 YEARS

Washington, D.C., May 19, 2010 – A new report from the Alzheimer’s Association, “Changing the Trajectory of Alzheimer’s Disease: A National Imperative” shows that in the absence of disease-modifying treatments, the cumulative costs of care for people with Alzheimer’s from 2010 to 2050 will exceed $20 trillion, in today’s dollars. The report, which examines the current trajectory of Alzheimer’s based on a model developed by the Lewin Group for the Alzheimer’s Association, also shows that the number of Americans age 65 and older who have this condition will increase from the 5.1 million today to 13.5 million by mid-century.

“We know that Alzheimer’s disease is not just ‘a little memory loss’- it is a national crisis that grows worse by the day,” said Harry Johns, President and CEO of the Alzheimer’s Association. “Alzheimer’s not only poses a significant threat to millions of families, but also drives tremendous costs for government programs like Medicare and Medicaid.”

Total costs of care for individuals with Alzheimer’s disease by all payers will soar from $172 billion in 2010 to more than $1 trillion in 2050, with Medicare costs increasing more than 600 percent, from $88 billion today to $627 billion in 2050. During the same time period, Medicaid costs will soar 400 percent, from $34 billion to $178 billion. One factor driving the exploding costs by 2050 is that nearly half (48 percent) of the projected 13.5 million people with Alzheimer’s will be in the severe stage of the disease – when more expensive, intensive around-the-clock care is often necessary.

Changing the Current Trajectory

The new report is not all bad news, however, as it shows that Medicare and Medicaid can achieve dramatic savings – and lives could be significantly improved – with even incremental treatment improvements. Based on the same Lewin Group model, the report explores two alternate scenarios: one in which a disease-modifying treatment could delay the onset of Alzheimer’s by five years, and another in which a hypothetical treatment could slow the progression of this condition.

“Today, there are no treatments that can prevent, delay, slow or stop the progression of Alzheimer’s disease,” said Johns. “While the ultimate goal is a treatment that can completely prevent or cure Alzheimer’s, we can now see that even modest improvements can have a huge impact.”

Impact of a Hypothetical Treatment Delaying Onset: A treatment breakthrough that delays the onset

of Alzheimer’s by five years – similar, perhaps, to the effect of anti-cholesterol drugs on preventing heart disease – would result in an immediate and long-lasting reduction in the number of Americans with this condition and the cost of their care. A breakthrough that delays onset by five years and begins to show its effect in 2015 would decrease the total number of Americans age 65 and older with Alzheimer’s from 5.6 million to 4 million in 2020.

-more-

Assuming the breakthrough occurred in 2015:

• The number of people age 65 and older with Alzheimer’s would be reduced by 5.8 million in 2050 – 43% of the 13.5 million Americans who would have been expected to have the condition in that year would be free of the conditions.

• In 2050, the number of people in the severe stage would also be much smaller with the treatment breakthrough – 3.5 million instead of the expected 6.5 million.

• Annual Medicare savings compared to current trends would be $33 billion in 2020 and climb to $283 billion by mid-century, while annual Medicaid savings would increase from $9 billion in 2020 to $79 billion in 2050.

Impact of Hypothetical Treatment Slowing Progression: A treatment breakthrough that slowed disease progression – much as we have managed to do with HIV/AIDS and several cancers – would result in far fewer people with Alzheimer’s disease in 2050 in the severe stage when care demands and costs are greatest. Assuming the breakthrough occurred in 2015:

• In 2020, the number of people age 65 and older with Alzheimer’s disease in the severe stage would drop from 2.4 million to 1.1 million. In 2050, the number of people in the severe stage would decline from an expected 6.5 million to 1.2 million.

• Annual Medicare savings compared to current trends would be $20 billion in 2020 and jump to $118 billion in 2050, while Medicaid savings would be $14 billion in 2020 and $62 billion in 2050.

Addressing the Chronic Underinvestment in Research

Ultimately solving the Alzheimer crisis will mean addressing the chronic underinvestment in research. This forecast of a rapidly aging population and dramatic rise in the number of Alzheimer cases in the coming years should catapult the government into action.

“Given the magnitude and the impact of this disease, the government’s response to this burgeoning crisis has been stunningly neglectful,” said Johns. “Alzheimer’s is an unfolding natural disaster. The federal government has sent a token response and has no plan. Immediate and substantial research investments are required to avoid an even more disastrous future for American families and already overwhelmed state and federal budgets,” continued Johns. “For the human effects and the country’s fiscal future, we must change the trajectory of the Alzheimer crisis.”

“The impact of Alzheimer’s disease - both in terms of lives affected and costs of care – is staggering. As government leaders contend with the best approaches to rein in Medicare and Medicaid costs, we know Alzheimer’s will place a massive strain on an already overburdened health care system,” said Robert J. Egge, Vice President of Public Policy for the Alzheimer’s Association. “This report highlights that while we strive for the ideal – a treatment that completely prevents or cures Alzheimer’s disease – even more modest, disease-modifying treatments would provide substantial benefits to families and contribute to the solvency of Medicare and Medicaid.”

The Association is working to enact critical legislation to address these issues. The National Alzheimer’s Project Act creates a National Alzheimer’s Project Office and an inter-agency Advisory Council responsible for developing a national plan to overcome the Alzheimer crisis. Drawing on the expertise residing in various government agencies as well as individuals living with the disease, caregivers, providers and other stakeholders, this office would provide strategic planning and coordination for the fight against Alzheimer’s across the federal government as a whole, touching on a broad array of issues from research to care to support.

After the embargo lifts, the full text of the Alzheimer’s Association’s “Changing the Trajectory of Alzheimer’s Disease: A National Imperative” can be viewed at www.alz.org/trajectory.

By Alzheimer’s Association

The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s.

RELEASED MAY 19 AT 10AM ET.

CONTACT: Toni Williams, 202.638.8666; toni.williams@alz.org

Should Mom Still Be Driving?

By Heather Frenette, RN, MSN, CMC

Whether or not an elderly person should be driving is a question I am frequently asked. It is a very touchy subject and most children do not want to force the issue with their parents. Getting a drivers license is a rite of passage that most teenagers look forward to. Having to give up that license can be very difficult. It affects a person’s independence. When a person has to surrender their driver’s license, they suddenly are dependent on others to get around. Going to the grocery store, going to the doctor and even going out with friends can become difficult without transportation.


There are several warning signs to look if you are concerned about a loved one’s safety behind the wheel. If you notice any of the following 17 warning signs, it is time to evaluate whether your loved one should continue driving.

1. signaling incorrectly

2. trouble making turns

3. changing lanes improperly

4. confusion at highway exits

5. difficulty parking

6. stopping inappropriately in traffic

7. confusing the brake and gas pedals

8. driving too fast or slow

9. hitting curbs

10. failing to notice stop signs or traffic lights

11. reacting slowly to traffic situations

12. failing to anticipate potential dangers

13. getting lost in familiar places

14. scrapes or dents on car, house, garage, etc.

15. traffic violations

16. near-misses

17. accidents

There are several options for driving evaluation. One option is to have an evaluation through a driving evaluation center. Although there are companies that offer these services, many of these programs are offered through larger rehabilitation centers as well. Another option is to have a physician write a letter to the Department of Motor Vehicles (DMV) expressing their concern about their patient’s driving ability. Once the DMV receives this letter, they will send out a letter to your loved one either revoking their license or requesting them to come in for a written test and/or an on the road driving test. Successful completion of the testing is necessary for the license to remain valid.

It can be hard for family members to address the topic of driving safety with their loved one. Involving the primary care physician in this process can be helpful because it takes the role away from the family. Another option is to consult with a Geriatric Care Manager. Care Managers are typically well versed in the resources to evaluate driving and can facilitate not only the testing, but also put a plan in place to address the need for transportation once the person stops driving. Again, involving an independent third party takes the pressure off the family and takes some of the emotion out of the situation.

Addressing driving concerns with your loved one can be stressful and very difficult. It is an emotional topic with significant consequences. Having a plan to both evaluate your loved one’s driving and to accommodate their transportation needs if they stop driving will help make this difficult task somewhat easier.

The Social Security Administration added early-onset/younger onset Alzheimer's!

Social Security Disability - Breaking News

The Social Security Administration (SSA) has added early-onset/younger onset Alzheimer's to the list of conditions under its Compassionate Allowance Initiative, giving those with the disease expedited access to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). The Alzheimer's Association, a longtime advocate for those with early-onset Alzheimer's, has played an integral role in this movement to reduce the length of disability decision process.

Complete statement from Alzheimer's Association

Washington, DC February 11, 2010 – In its effort to improve and expedite the disability
determination process, the Social Security Administration (SSA) has announced that it
will add early-onset Alzheimer’s disease to its Compassionate Allowances Initiative. The
initiative identifies debilitating diseases and medical conditions that meet the SSA’s
disability standards for Social Security Disability Income (SSDI) or Supplemental
Security Income (SSI). Inclusion in the initiative allows for faster payment of Social
Security benefits to individuals with Alzheimer’s disease. The Alzheimer’s Association
applauds Social Security Commissioner Michael Astrue and the SSA for understanding
that the cognitive impairment caused by Alzheimer’s disease leaves individuals unable
to maintain gainful employment and deserving of an expedited disability determination.

“As the leading research, advocacy, and support organization for Alzheimer’s disease,
the Alzheimer’s Association has actively sought the inclusion of early-onset Alzheimer’s
in the Social Security Administration’s Compassionate Allowances Initiative,” says Harry
Johns, President and CEO of the Alzheimer’s Association. “Now, individuals who are
dealing with the enormous challenges of Alzheimer’s won’t also have to endure the
financial and emotional toll of a long disability decision process.”

Since 2003, the Alzheimer’s Association has been advocating on behalf of individuals
with early-onset Alzheimer’s as they navigate the Social Security disability
determinations process and welcomes the SSA’s decision. Until now, individuals with
early-onset Alzheimer’s disease have faced a myriad of challenges when applying for
SSDI or SSI, including a long decision process, initial denials, and multiple appeals.
Today’s decision will simplify and streamline the SSDI/SSI application process and
decrease the wait time for benefits, which for some has lasted as long as three years.
There are currently an estimated 5.3 million Americans with Alzheimer’s disease.
Although the majority of Alzheimer cases are individuals age 65 and older, a significant
number of people under age 65 are also affected by this fatal disease and have few
financial options other than the Social Security disability program.

In addition to Alzheimer’s disease, mixed-dementia and Primary Progressive Aphasia
were also added to the Compassionate Allowances Initiative under the SSA’s recent
decision. To determine which diseases and conditions to include, SSA has held several
public outreach hearings throughout the country that have included testimony from
medical and scientific experts, as well as those directly affected by these diseases and
conditions. The July 2009 Compassionate Allowance Hearing on Early-Onset
Alzheimer’s Disease and Related Dementias, held in Chicago, included testimony from
Johns, several of the nation’s top Alzheimer researchers, and caregivers and individuals
with early-onset Alzheimer’s who discussed the challenges they faced during the
disability application process. During the day-long hearing, SSA officials heard about the
terminal nature of Alzheimer’s, the disabilities that often prohibit work in even the earliest
stages of the disease, and the lack of effective treatments to modify or halt the
progression of Alzheimer’s.

In addition to participation in the hearing, as many as 600 people with Alzheimer’s and
other dementias and their caregivers responded to the Association’s request to submit
written comments to SSA about their experiences applying for disability benefits. A
sample of these comments are posted on SSA’s Compassionate Allowances website:
http://www.socialsecurity.gov/compassionateallowances/statements.htm

The Social Security Administration’s proactive efforts to “fast track” certain conditions will
help to reduce the backlog of disability claims and, more importantly, ensure those
claims that fall under this initiative will be decided within days instead of months or
years.

“The diagnosis of Alzheimer’s indicates significant enough cognitive impairment to
interfere with daily living activities, including the ability to work. This decision will help a
significant number of Alzheimer families. It will also help the Social Security
Administration, since long delays and appeals in the disability determination process are
costly for the agency,” says Johns. “The Alzheimer’s Association praises SSA for this
decision and remains committed to continue to work with Commissioner Astrue and his
colleagues at the Social Security Administration in support of its implementation
nationwide.”

Early-stage and younger-onset Alzheimer's Disease Defined

Early-stage is the early part of Alzheimer’s disease when problems with memory, thinking and concentration may begin to appear in a doctor’s interview or medical tests. Individuals in the early-stage typically need minimal assistance with simple daily routines. At the time of a diagnosis, an individual is not necessarily in the early stage of the disease; he or she may have progressed beyond the early stage.
The term younger-onset refers to Alzheimer's that occurs in a person under age 65. Younger-onset individuals may be employed or have children still living at home. Issues facing families include ensuring financial security, obtaining benefits and helping children cope with the disease. People who have younger-onset dementia may be in any stage of dementia – early, middle or late. Experts estimate that some 500,000 people in their 30s, 40s and 50s have Alzheimer's disease or a related dementia.

By Alzheimer's Association

Early-onset Alzheimer's: When symptoms begin before 65

Early-onset Alzheimer's is an uncommon form of dementia that strikes people younger than age 65. Glenn E. Smith, Ph.D., a neuropsychologist at Mayo Clinic, Rochester, Minn., answers questions about this condition.

How common is early-onset Alzheimer's?

Of all the people with Alzheimer's disease, only 5 to 10 percent develop symptoms before age 65. So if 4 million Americans have Alzheimer's, at least 200,000 people have the early-onset form of the disease. Early-onset Alzheimer's has been known to develop between ages 30 and 40, but that's very uncommon. It is more common to see someone in his or her 50s who has the disease.

What causes it?

It often runs in families. Many people with early-onset Alzheimer's have a parent or grandparent who also developed Alzheimer's at a younger age. A significant proportion of early-onset Alzheimer's is linked to three genes.

These three genes are different from the APOE gene — the gene that can increase your risk of Alzheimer's in general. But you can have the APOE gene and never develop Alzheimer's. Conversely, you can have Alzheimer's and not have the APOE gene. The genetic path of inheritance is much stronger in early-onset Alzheimer's. If you have one of those three genes, it would be very unusual for you not to develop Alzheimer's before age 65.

If early-onset Alzheimer's runs in my family, should I get tested for it?

That's a personal decision that only you can make. There are pros and cons to genetic testing. Anyone who's considering it should never proceed without genetic counseling — to examine these pros and cons beforehand.

Does early-onset Alzheimer's progress at a faster rate?

There's a perception that it does, but it's not backed up by hard data. It depends on what endpoint you're using in your measurement. If you use admission to a nursing home, that may occur earlier for the early-onset group — but only because their spouses have so many other things on their plates.

For example, people who have early-onset Alzheimer's often still have children at home. They or their spouses may have elderly parents that need care, too. That generation often is sandwiched between caring for their ailing parents and caring for their teenage children at the same time. Adding in a spouse with Alzheimer's can simply be too much to handle.

What types of problems occur more often in early-onset Alzheimer's?

Alzheimer's disease has a tremendous impact at any age. But we don't expect to see dementia at a young age, so problems emerging at work or home may be mistakenly ascribed to lack of motivation or diligence, or possible psychiatric problems. People with early-onset Alzheimer's may lose relationships or be fired instead of being identified as medically ill or disabled.

The loss of intimacy is something that comes up a lot with early-onset Alzheimer's. Many people who develop late-onset Alzheimer's have already been widowed. But couples in their 40s or 50s are often in the middle of their married lives. Spouses face the possibility of spending many years of their lives without an active partner. Losing the romantic component and changing to a caregiver status complicates the relationship.

Are there financial issues as well?

People with early-onset Alzheimer's often have to quit work, and this loss of income is a serious concern. Finances get even tighter if their spouses also quit their jobs to become full-time caregivers. Some medical benefits and many social-support programs won't provide assistance unless the person with Alzheimer's is over age 65. Younger people may need special waivers to get into such programs.

How important is it to obtain an accurate diagnosis?

Accurate diagnosis is critical so that you can explain your condition to your employer and perhaps arrange a lighter workload or more convenient schedule. For family reasons it is even more crucial. The diagnosis is fundamental in helping the family react with appropriate understanding and compassion. In addition, a complete evaluation will rule out reversible forms of dementia that might improve with treatment.

What advice do you have for those with early-onset Alzheimer's and their families?

The key treatments in Alzheimer's are education and support. This is especially true given the unique social challenges of early-onset Alzheimer's. Getting connected to services such as support groups can help you identify resources, gain a deeper understanding and learn ways to adapt to the situation.

By Mayo Clinic Staff

Alzheimer's, Sleep, and Patterns

"With Alzheimer's disease it is all about establishing patterns of behavior. Whether it is the pee pee war, poop war, or sleeping you have to get into a pattern. You have to establish a pattern of behavior that is conducive to accomplishing a mission...."

Every so often I receive an email asking for advice on the Alzheimer's patient and sleeping. Some dememtia sufferers get up frequently at night, and others stay up all night.

When I receive these emails, I am immediately concerned. There is a very high correlation between sleep deprivation and depression. In the case of the Alzheimer's caregiver, the combination of stress and not getting a good night's sleep can lead to depression. This helps explain, in part, why 40 percent of Alzheimer's caregivers suffer from depression.

In this most recent email, our reader explains that his mother is staying up all night. The first solution the doctor offered was to put his mother on antipsychotic drugs. Yikes. Fortunately, our reader has his eye on the ball and has learned that the combination of Alzheimer's and antipsychotic drugs in not only a bad idea -- its dangerous.

See...Antipsychotics, Aricept, and a Good Point Guard

I am not a doctor, and I don't pretend to be a doctor. The potential solution I am offering here is as a fellow Alzheimer's caregiver.

The first question I always ask is, is the Alzheimer's patient sleeping during the day. Usually the answer is Yes. Well, you can only sleep so much in any 24 hour day. If you get 3 or more hours of sleep during the day, it is likely that you won't sleep much at night or that you will wake up in the very early AM. In order to sleep 6 hours or more, through the night, this pattern needs to be changed.

With my mother the question I have learned to ask myself in every situation is -- what is the pattern? What is the pattern of behavior?

In the pee pee war, I finally realized I had to get my mother into the bathroom every two hours. I learned by simple observation that when my mother said those magic words -- I have to pee -- it was too late. She is older and she can't hold it in. Her pee pee muscle is weak. I'll interject here. I learned how to make my own pee pee muscle stronger through a couple of simple exercises.

Our reader explained that his mother does sleep during the day. Maybe most of the day. At night, when it is time to sleep, he puts his mother in bed and then turns on the TV. He know she is up and watching TV all night because he hears her talking to the television via the baby monitor he installed in her room.

Baby monitor, excellent idea. TV on, bad idea. Awake at night hearing mother talk and the TV on, very bad.

I don't watch television in the bedroom. I believe it is a bad idea. The bed is for sleeping. If you use the bed for sleeping you are establishing the correct pattern of behavior. If you use the bed to watch TV you are diluting the correct pattern of behavior. I will interject another tidbit here, I believe television in the bedroom is a bad idea if you are married. You can decide that one for yourself. Bed equals sleep.

After our reader told the doctor that he would not give his mother antipsychotic drugs, the doctor came up with another solution -- valium. So it now appears our reader will try the combination of Ambien and Valium. Double yikes.

First off, if Ambien doesn't work from the get go then it doesn't work. If it doesn't work, jettison the drug. Get rid of it. All drugs are designed to accomplish a mission. Sometimes they work very well for a person. Sometimes they don't work at all for a person. This is a simple fact of life. You are wasting your time, money, and maybe even hurting yourself when you try kicking a dead horse. A dead horse is not going to get up and starting running. Put the bubble up above your head. Imagine yourself kicking a dead horse. Let me know.

For some reason I will never fully understand, I wonder why doctors are addicted to writing prescriptions? You would think an experienced doctor would be asking the same questions I am asking here. What is the pattern of behavior?

Wouldn't it make more sense to first change the pattern of behavior before working your way through the PDR? The Physicians Desk Reference contains all the FDA approved drugs, a description of the drugs, and a picture of the drugs. Rather than trying all the drugs, how about this? Try reading the PDR when you get in bed. Sleep is on the horizon, trust me.

I am confident that changing the pattern of behavior is the best potential solution. Is if fool proof? Will it work every time? No. But I know that it can work because I suggested it to some readers and they told me it did work.

My advice is simple and straight forward. Start doing things during the day that engage the person suffering from Alzheimer's disease. Keep them up and moving to the degree possible. Involve them in normal every day activities like going to the store. If they have trouble walking try what I did, I get my mother to drive around in the motorized cart with me in Walmart while we shop.

Try and remember, what did the person suffering from Alzheimer's like to do before Alzheimer's? Puzzles, crossword puzzles, read the comics, art, music, going to the mall for no good reason? Try to engage them in these activities during the day.

Key word here day -- get them into some bright light. Sun is good. A well lit store is good.

Here are some simple activities. Take them to McDonald's for a cup of coffee. Ask for the senior discount. Take them for a ride in the car. Library anyone? Let them sit over near the kids section. This works wonderfully well. If they are not a wanderer, my mother isn't, this really works well on several levels.
If you want a person to sleep at night, you can't let them sleep all day. Alzheimer's or not, you sleep all day, you won't sleep at night. Simple observation.

With Alzheimer's disease it is all about establishing patterns of behavior. Whether it is the pee pee war, poop war, or sleeping you have to get into a pattern. You have to establish a pattern of behavior that is conducive to accomplishing a mission.

Whether it is pee pee, poop, or sleep in won't happen in a New York minute. You have to work on it. It takes time to establish a pattern of behavior. Here is the good news. Once you establish a good pattern of behavior it will stick if you keep reinforcing the pattern.

If you fall into a bad pattern of behavior guess what? It will persist. It will persist until you decide to change the pattern. To change a pattern of behavior to have to be committed to change. You have to be goal oriented. You have to be working toward that goal each day.

Or, you can keep kicking a dead horse.
By Bob DeMarco, Alzheimer's Reading Room

Sobering Statistics about Alzheimer's Disease

By the time you finish reading this article a few more people will be officially suffering from Alzheimer's disease.

Here is a startling perspective.

It is not unusual for a person working on Wall Street (New York) to spend a total of three hours a day commuting to and from work. Many of these people live on Long Island, in Connecticut and New Jersey.

There are 180 minutes in three hours. There are 10,800 seconds in three hours.

While these people are commuting to and from work each day, another 154 persons are diagnosed with Alzheimer's.

Each day, 1,232 people are diagnosed with Alzheimer's.

Each week, 8,634 people are diagnosed with Alzheimer's.

A recent Harris Interactive poll showed that more than 100 million Americans have been touched by Alzheimer's. More than 33 million Americans are worried about Alzheimer's disease.

Startling numbers.

Alzheimer's disease is a death sentence. Brain death. A typical person takes from 5-20 years to die. It is not unusual for the disease to take more than a decade to kill someone.

When most people think about Alzheimer's they think about a person losing their memory. Persons that know someone suffering from Alzheimer's disease watch them lose their ability to brush their teeth, take a shower, put on their cloths, go to the bathroom, and eat.

They await the worse day of them all -- the day the person suffering from Alzheimer's won't know them. Or anyone for that matter.

Alzheimer's disease is sinister and ugly.

If you don't know someone directly or indirectly that is suffering from Alzheimer's you will soon. It might have happened while you were reading this article.

By Bob DeMarco, Alzheimer's Reading Room

Should Dad Still Be Driving?

Most people remember learning to drive and the feeling of independence it gave them. This is much of the reason it is so hard for an older adult to give up driving. When addressing the issues of driving with a parent, it is important to understand why driving is important to them. Is it an independence issue? Is it because they need transportation to appointments and errands? Is it an issue of control over their life? If transportation is the concern, then having alternative options to assist them in getting to appointments, the grocery store and other errands will be critical. If independence or control is the issue, it may be helpful to point out that this is not about taking away their independence or control, it is about their safety and equally important, the safety of others on the road. Many times older adults are less concerned about their own safety and well being than they are of the safety and well being of others, especially children.

This issue may be better received if presented by a person in a position of respect, such as a physician or an attorney. Another option is for a comprehensive assessment by a Certified Care Manager. In addition to assessing and making recommendations about the client’s current functional level, the appropriateness of their living environment and their overall safety, the Care Manager can assess driving safety and alternatives to driving. Many times information which will not be well received by the older adult is better delivered by a neutral third party than it is from a family member, especially a child.

By Heather Frenette, RN, MSN, CMC

How to decide if your family needs a geriatric-care manager

By Anya Martin

DECATUR, Ga. (MarketWatch) -- The holidays should be a joyful time of homecoming for families, but sometimes those visits also reveal that elderly parents are more frail or more forgetful than before. Discoveries like these may suggest that it's time to consult a geriatric-care manager.

When Nancy Gratzel's mother had a sudden change in her health requiring placement in a nursing home, Gratzel and her four siblings found themselves overwhelmed by the complex paperwork to qualify for Medicaid coverage. So they turned to Stephen Mielach, a geriatric-care manager based in their community of Toms River, N.J.

"It's a very cumbersome process because you have to find all your parents' documents and follow the trail of their money over the past five years," Gratzel said. "I decided that my time constraints didn't allow me to attend to that. I commute to work, have long work days, and all my siblings are married with children and very active."

Now Mielach also shares a power of attorney with Gratzel to assist her 88-year-old father, now living on his own, with bill-paying -- a task that his wife used to perform exclusively. Her father appreciated the help and began to look forward to Mielach's visits, she said.

"To me, that was a good use of my parents' money which we were going to have to spend anyway [to meet Medicaid qualifications]," Gratzel said. "It afforded me the opportunity to direct my energy towards nicer things, helping my mom adjust to the facility and my dad to living at home alone. They had been married 67 years."

While most seniors and their families do not go so far as to assign power of attorney to geriatric-care managers, members of this growing profession can assist not just with money matters but also with navigating the often complicated decisions about what care is best for mom, dad or another relative.

Sometimes they help resolve a short-term challenge such as Mielach did initially for Gratzel's mother or they may provide assistance over a period of months or years. Sample tasks range from vetting home health aides to assessing whether a senior is able to remain at home or needs to relocate to an assisted-living community or nursing home. They may also accompany seniors to medical appointments and ensure they receive the prescribed follow-up such as lab tests and radiology scans or find contractors and coordinate bids for home repairs, for instance.

Or when a senior has no spouse or children, a geriatric-care manager may take on even more responsibilities to fill that void.

"For people who have family, I become the expert in the family," Mielach said. "For those with no family, I become family for hire."

Boomers' aging parents spur demand

The profession of geriatric-care manager has been around for decades but really has taken off in the past 10 years as the baby boomers increasingly became long-distance caretakers of elderly parents, said Joyce Gray, a Philadelphia-based certified geriatric-care manager who serves on the board of the National Association of Professional Geriatric Care Managers, the industry's trade association. The group's membership has grown from 50 to 2,000 since its 1985 founding.
"There are a lot more older people who don't have someone locally to look after them," Gray said. "The baby boomers also are more used to paying for services and expecting high quality and results."

Another change Gray has noticed is that more people are contacting her proactively rather than in the middle of a crisis such as a broken hip or an Alzheimer's diagnosis, she said.
A decade ago, Ron Fatoullah, a New York-based certified elder law attorney, rarely recommended that his clients consult a geriatric-care manager. Now he refers at least one-third to see one, if only to validate that seniors and their family are making the appropriate care and financial decisions for their health and happiness.

"I have to know that my client is placed in the right facility, and if they're going to be at home, that it's the proper environment with all the safety features they need," Fatoullah said. "The care management assessment heavily dictates how I do my legal work."

In the case of Gratzel's mother, all family members agreed she needed nursing home care. However, geriatric-care managers also can be valuable third-party referees, providing an impartial viewpoint to siblings or children and a parent with different opinions about what is best for the senior, Fatoullah said.

"I've seen a reluctance among seniors to want any care, and if a child mentions it, the parent may bite the child's head off," he added. "But some geriatric-care managers are very good with seniors and letting them know in a constructive way that they do need care."

A background in nursing or social work

Most geriatric-care managers come to the profession from nursing, social work or a handful of other fields related to geriatrics or long-term care, according to NAPGCM.

Before launching his geriatric-care management practice 20 years ago, Mielach, a licensed clinical social worker, was director of social work at a hospital. During that time, he became an expert in tracking down relatives of seniors who were admitted to the hospital and did not have obvious family members. Those responsibilities eventually led to him becoming a court-appointed guardian when no relatives could be found, and he realized that he enjoyed not just the detective work but the chance to improve people's lives.

Mielach even accompanied one New Jersey woman with dementia across the country to move into a New Mexico assisted-living community near close friends.

He also sometimes serves as a health proxy, a legal status which allows him to make medical decisions based on a previous consultation as to the seniors wishes, he said. In a recent example, a client of 12 years had a stroke which robbed her not just of mobility but the ability to speak, and Mielach had to inform the EMS team that she did not want to be taken to the hospital.
"I always go into detail about what values you have so if a situation comes up, I can make decisions consistent with your values," Mielach said. "But in 20 years of doing this, I have never been so confident that someone did not want treatment as with this woman."

Geriatric-case managers typically charge by the hour, and rates vary from $80-$200/hour depending on location, Gray said. Most also charge an initial assessment fee ranging from $300-$800, she added.

Some geriatric-care managers may also agree to a lump sum for a particular service. For example, Mielach charges between $1,000 to $5,000 to research and prepare a Medicaid application, depending on the complexity involved.

While health insurance policies do not cover care-management services, some long-term-care policies do.

How to find a care manager

In the past, finding a geriatric-care manager was very much through word-of-mouth referrals, and asking a hospital discharge planner, psychiatrist or elder law attorney for suggestions in your community is still one good way to start, Gray said.

Another option is to consult NAPGCM's nationwide directory at its Web site, http://www.caremanager.org/. As of January 1, 2010, all NAPGCM members are required to have at least one of four professional certifications: Care Manager Certified (CMC), Certified Case Manager (CCM), Certified Social Work Case Manager (C-SWCM) and/or Certified Advanced Social Work Case Manager (C-ASWCM).

One red flag would be care managers who say they got into the field after helping their own relative but don't have much other experience or have not committed the time to get professional training, Gray said.

You should also be sure to ask for references, and most care managers will offer a free 20- to 30-minute telephone interview so families can get a sense of how they work, their fee schedule and whether their personality is a good match, she added.

"It's important to have a sense of trust right from the start that you can work with this person and that your mother, father, aunt, uncle can work with them, too," Gray said.

More questions to ask include whether the geriatric-care manager is part of a solo or group practice and who covers for them if they are away, she added. Are they available 24 hours a day and on weekends, because that is when many falls and other health crises occur?
Finally, don't hire anyone who accepts financial rewards from nursing homes, home health agencies or other providers. Such practices are directly in conflict with NAPGCM's ethical standards and suggest that the geriatric-care manager may not have a seniors best interests at heart, Gray said.