Loneliness Bodes Poorly For A Healthy Old Age

They're time-consuming, demanding and require birthday cards, but they may help keep you alive. Friends and family, that is.

Loneliness in older people can predict declines in health and an increased risk of death, according to findings just published online by the Archives of Internal Medicine. People over 60 who felt lonely had a 45 percent higher risk of death than those who weren't lonely, the six-year-long study found. In absolute terms, the risk of death was about 23 percent for the lonely people and 14 percent for those who weren't.


The lonely people in the study were also more prone to have limited mobility and face greater difficulty performing basic tasks like grooming and housekeeping. On that score, about a quarter of lonely people were likely to develop trouble compared to about 13 percent who weren't lonely.

While the connection between well-being and friendships isn't new, the latest findings look specifically at people who self-identified as lonely, regardless of the how extensive their social network was.
"It's about connectivity," lead researcher Carla M. Perissinotto tells Shots. "Someone can have multiple social contacts but still somehow felt that they're not connecting." Many people who said they were lonely, for example, were married or lived with someone else.

Perissinotto, a geriatrician, cited one of her patients, a 93-year-old woman who had difficulty eating. The woman kept losing weight because she lived alone and viewed eating as a social activity. To treat her, Perissinotto looked for ways to help the woman be with peers during mealtimes.

The data, which were collected every two years from 2002 through 2008 as part of the nationally administered Health and Retirement Study, looked at 1,604 cases to assess risk factors. The study only included people living in the community — not those in care facilities or retirement homes.
By asking about patient's feelings, Perissinotto says she hopes physicians can broaden their understanding of potential health risks and think creatively about addressing them. She says the study can't conclusively prove cause and effect, but sheds light on a significant health issue.

"We could be missing a big part of the puzzle if we choose to focus on traditional medical risk factors," Perissinotto says. "By asking these questions, I may be finding one more way of intervening with these patients."

An accompanying editorial notes that some of the predictive factors found in this study and some others published at the same time should get more attention. "Loneliness is a negative feeling that would be worth addressing even if the condition had no health implications," the authors of the editorial note.

Copyright 2012 National Public Radio. To see more, visit http://www.npr.org/.

A New Attack on Alzheimer’s

The Obama administration has announced a bold research program to test whether a drug can prevent the onset of Alzheimer’s disease well before any symptoms appear. It is a long shot, but the payoff could be huge.

The prevailing, but not universally accepted, hypothesis is that amyloid plaques in the brain play a major role in causing Alzheimer’s. Crenezumab attacks the formation of such plaques, apparently by binding to amyloid proteins and clearing them from the brain. If the drug fails to work, the trial will probably demolish the amyloid hypothesis and set researchers scrambling to find other targets to attack.

Currently, there is no cure for Alzheimer’s, which steadily robs patients of their memory, followed by full-blown dementia. There is also no diagnostic test to identify who has it, and no treatment to slow patients’ deterioration for more than a few months. 

 

While work continues on those fronts, the new clinical trial will test whether the drug, Crenezumab, made by Genentech, can prevent the disease in a group of people whose genetic heritage guarantees that they will develop it. If the drug successfully prevents the loss of mental capacities as measured by a sensitive new cognitive test there is hope — but no guarantee — that it could do the same for members of the general public. As Pam Belluck described in The Times last week, the trial will focus on members of an extended family in Colombia who carry a rare genetic mutation that causes them to develop Alzheimer’s early in life. They typically experience cognitive impairment at about age 45 and dementia by 51. The trial will also include a smaller number of individuals in the United States with the same genetic mutation. 

Instead of recruiting thousands of volunteers and following them for an extended period as in a customary prevention trial, the researchers in Colombia will give the drug to only 100 people with the early-onset genetic mutation. They will give placebos to another 100 people with the mutation and to 100 family members who do not carry the deadly gene. 

The study will cost more than $100 million and is being financed mostly by Genentech, buttressed by $16 million from the National Institutes of Health and $15 million raised by the Banner Alzheimer’s Institute in Phoenix, which is leading the study. 

A prevention trial of a different drug that was also intended to slow formation of amyloid plaques actually made patients’ symptoms worse, possibly because it interfered with various other proteins needed by the brain. Researchers believe that Crenezumab will be safer and more effective, but again there are no guarantees. The risk is justified given that without the treatment the recipients will inevitably get Alzheimer’s in the prime of their lives. The truly big payoff will come if the drug succeeds in this group and lays the groundwork for preventing or slowing the progress of Alzheimer’s that appears late in life. The researchers will be gathering data on a variety of biomarkers — glucose activity in the brain, shrinkage of the brain, certain proteins in cerebral spinal fluid, for example — to see which if any are related to preventing amyloid plaques and the loss of mental abilities. 

If the drug prevents the deterioration of particular biomarkers and ultimately sustains mental capacity, then the same markers might be useful in identifying and treating older people likely to develop the disease. And federal regulators might be willing to approve other prevention drugs based on their short-term effects on biomarkers, speeding the conduct of clinical trials. 

More than five million Americans currently have Alzheimer’s. Without an effective preventive, the number will rise steadily as the population ages. 

Published: May 20, 2012  by NY Times, Editorial

Tips on Alzheimer's Wandering Why it Happens and What to do

Wandering is among the most unsettling and even terrifying behaviors people with Alzheimer's display. Often poorly clad, they leave safety at random hours and strike out into unknown territory, for no apparent reason. But this seemingly aimless activity usually does have a reason. It's often an attempt to communicate after language skills have been lost.

Alzheimer's caregivers ask if I am worried that my mother might wander away from me and get lost. Wandering is one of the more widely known behaviors of people suffering from Alzheimer’s disease.

I am not worried about my mother wandering at this time because she can't walk very far. I can say I would be very worried at this stage if she could walk.

I can't remember how many people emailed me and were lamenting that there loved one wanted to "go home." When you hear this you really need to start paying attention. The patient could make a break for it at any time.

"Going home" is an elusive term. It could mean back home to where they last lived, or home to the place were they were born. In many of the stories about wandering the patient takes off to a place they once lived that brings back fond memories.

It isn't easy to find a person suffering from Alzheimer's once they "take off." They don't wander logically. Sometimes it is like looking for a needle in a haystack.

One of the most fascinating stories of wandering I read was about a woman that wandered way from her home in Frederick, Maryland at night on foot.

To find the missing elderly woman the Frederick police had to use 50 to 60 police and civilians, and four civilian K-9 search and rescue groups.

The woman was missing for more then 8 hours in temperatures that dropped as low as 20 degrees. She was finally located "huddled up" on a property adjacent to her home. Go figure.

Another man wandered from a Denver, Colorado suburb to San Diego,California. He was lost for three days. How did he do it? He walked down to the corner and took public transportation to the Greyhound bus station. He then took a series of buses to San Diego.

Alzheimer's: Understand and control wandering

Find out why people with Alzheimer's wander and what you can do to keep them safe.

  

Alzheimer's disease can erase a person's memory of once-familiar surroundings and make adaptation to new surroundings extremely difficult. As a result, people with Alzheimer's sometimes wander away from their homes or care centers and turn up — frightened and disoriented — far from where they started, long after they disappeared.

Wandering is among the most unsettling and even terrifying behaviors people with Alzheimer's display. Often poorly clad, they leave safety at random hours and strike out into unknown territory, for no apparent reason. But this seemingly aimless activity usually does have a reason. It's often an attempt to communicate after language skills have been lost.

Wandering may communicate something as simple as "I'm feeling lost," or "I feel as though I've lost something." It can also signal such basic needs as hunger and thirst, the need to void, or the need for exercise or rest.

Other causes of wandering:

Too much stimulation, such as multiple conversations in the background or even the noise of pots and pans in the kitchen, can trigger wandering. Because brain processes slow down as a result of Alzheimer's disease, the person may become overwhelmed by all the sounds and start pacing or trying to get away.

Wandering also may be related to:

• Medication side effects  
• Memory loss and disorientation
• Attempts to express emotions, such as fear, isolation, loneliness or loss
• Curiosity
• Restlessness or boredom
• Stimuli that trigger memories or routines, such as the sight of coats and boots next to a door, a signal that it's time to go outdoors
• Being in a new situation or environment
• Tips to prevent wandering

Although it may be impossible to completely prevent wandering, changes in the environment can be helpful. For example, a woman who was a busy homemaker throughout her life may be less likely to become bored and wander if a basket of towels is available for her to fold.

People with Alzheimer's often forget where they are. They may have difficulty finding the bathroom, bedroom or kitchen. Some people need to explore their immediate environment periodically to reorient themselves.

Posting descriptive photographs on the doors to various rooms, including a photo of the individual on the door to his or her own room, can help with navigation inside the home. Offering a snack, a glass of water or use of the bathroom may help identify a need being expressed by wandering. Sometimes the wandering person is looking for family members or something familiar. In such cases, providing a family photo album and sharing reminiscences may help.

Watch for patterns

If wandering occurs at the same time every day, it may be linked to a lifelong routine. For instance, a woman who tries to leave the nursing home every day at 5 p.m. may believe she's going home from work.

This belief could be reinforced if she sees nursing home personnel leaving at that time. A planned activity at that hour, or arranging for staff to exit through a different door at the end of their shift, could provide a distraction and prevent the wandering behavior.

Make a safer environment

If wandering isn't associated with distress or a physical need, you may want to focus simply on providing a safe place for walking or exploration.

Living spaces will be safer after you remove throw rugs, electrical cords, and other potential trip-and-fall hazards. Rearranging furniture to clear space can help. Childproof doorknobs or latches mounted high on doors help prevent wandering outside. Sometimes a stop sign on an exit door is enough.

Rooms that are off-limits pose a different problem. Camouflaging a door with paint or wallpaper to match the surrounding wall may short-circuit a compulsion to wander into such rooms. Night lights and gates at stairwells can be used to protect night wanderers.

Help ensure a safe return

The Alzheimer's Association's Safe Return program is designed to help identify people who wander and return them to their caregiver. Caregivers who pay a registration fee receive:

• An identification bracelet
• Name labels for clothing
• Identification cards for wallet or purse
• Registration in a national database with emergency contact information
• A 24-hour toll-free number to report someone who is lost

You can register someone by filling out a form online at the Alzheimer's Association's Web page or by calling (888) 572-8566.

Source Mayo Clinic

By Bob DeMarco

Alzheimer's Reading Room

Alzheimer’s Memory Problems Originate with Protein Clumps Floating in the Brain, Not Amyloid Plaques

Researchers at Mount Sinai School of Medicine have found that Alzheimer’s is not caused by amyloid plaques, as previously thought by many researchers......

Using a new mouse model of Alzheimer's disease, researchers at Mount Sinai School of Medicine have found that Alzheimer's pathology originates in Amyloid-Beta (Abeta) oligomers in the brain, rather than the amyloid plaques previously thought by many researchers to cause the disease.

The study, which was supported by the "Oligomer Research Consortium" of the Cure Alzheimer Fund and a MERIT Award from the Veterans Administration, appears in the journal Annals of Neurology.

"The buildup of amyloid plaques was described over 100 years ago and has received the bulk of the attention in Alzheimer's pathology," said lead author Sam Gandy, MD, PhD, Professor of Neurology and Psychiatry, and Associate Director of the Alzheimer's Disease Research Center, Mount Sinai School of Medicine. "But there has been a longstanding debate over whether plaques are toxic, protective, or inert."

Several research groups had previously proposed that rather than plaques, floating clumps of amyloid (called oligomers) are the key components that impede brain cell function in Alzheimer's patients. To study this, the Mount Sinai team developed a mouse that forms only these oligomers, and never any plaques, throughout their lives.

The researchers found that the mice that never develop plaques were just as impaired by the disease as mice with both plaques and oligomers. Moreover, when a gene that converted oligomers into plaques was added to the mice, the mice were no more impaired than they had been before.

"These findings may enable the development of neuroimaging agents and drugs that visualize or detoxify oligomers," said Dr. Gandy. "New neuroimaging agents that could monitor changes in Abeta oligomer presence would be a major advance. Innovative neuroimaging agents that will allow visualization of brain oligomer accumulation, in tandem with careful clinical observations, could lead to breakthroughs in managing, slowing, stopping or even preventing Alzheimer's.

"This is especially important in light of research reported in March showing that 70 weeks of infusion of the Abeta immunotherapeutic Bapineuzumab® cleared away 25 percent of the Abeta plaque, yet no clinical benefit was evident."

The Mount Sinai team included Michelle Ehrlich, MD, Professor of Pediatrics, Neurology, and Genetics and Genomic Sciences, and John Steele, a Mount Sinai graduate student, who performed the key analyses of the behavioral data. Dr. Charles Glabe, an oligomer expert and a member of the Cure Alzheimer Fund research consortium, is also a co-author of the paper. Dr Gandy is also a neurologist at the James J Peters Veterans Affairs Medical Center, an affiliate of Mount Sinai School of Medicine.

About The Mount Sinai Medical Center

The Mount Sinai Medical Center encompasses both The Mount Sinai Hospital and Mount Sinai School of Medicine. Established in 1968, Mount Sinai School of Medicine is one of few medical schools embedded in a hospital in the United States. It has more than 3,400 faculty in 32 departments and 15 institutes, and ranks among the top 20 medical schools both in National Institute of Health funding and by U.S. News & World Report. The school received the 2009 Spencer Foreman Award for Outstanding Community Service from the Association of American Medical Colleges.

The Mount Sinai Hospital, founded in 1852, is a 1,171-bed tertiary- and quaternary-care teaching facility and one of the nation’s oldest, largest and most-respected voluntary hospitals. In 2009, U.S. News & World Report ranked The Mount Sinai Hospital among the nation’s top 20 hospitals based on reputation, patient safety, and other patient-care factors. Nearly 60,000 people were treated at Mount Sinai as inpatients last year, and approximately 530,000 outpatient visits took place.

For more information, visit http://www.mountsinai.org/.

By Bob DeMarco
Alzheimer's Reading Room

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.”

Researchers find new risk factor for early-onset dementia

Examining brain tissue from over 500 individuals in 11 countries, researchers from the University of Pennsylvania School of Medicine and the Children's Hospital of Philadelphia, and colleagues found a new risk factor for the second-most-common cause of early-onset dementia after Alzheimer's disease.

"Using a genome-wide scan for genetic variation in post-mortem brain tissue, we were able to pinpoint variations common to patients with a specific subtype of frontotemporal lobar degeneration, FTLD," says co-first author Vivianna Van Deerlin, MD, PhD, associate professor of Pathology and Laboratory Medicine at Penn. "This gives us more information on what proteins may underlie the molecular events leading to FTLD, and eventually, new drug targets." The findings were published online this week in Nature Genetics.

"By identifying gene variants that may play a role in the development and progression of one type of FTLD, this research, if replicated, will take us one step closer to an understanding of the complex biologic pathways involved in this devastating disease," said Marcelle Morrison-Bogorad, PhD, director of the National Institutes of Health Division of Neuroscience.

The findings build on a 2006 discovery by co-senior authors Virginia Lee, PhD, director of the Center for Neurodegenerative Disease Research, and John Q. Trojanowski, MD, PhD, director of the Institute of Aging at Penn. They led an international team that found that a protein called TDP-43 accumulates abnormally in brain tissue from individuals with one type of heritable FTLD. TDP-43 is a known protein widely expressed throughout the body, with multiple functions, including regulating transcription of the genetic code and as scaffolding for nuclear and motor neuron proteins.

FTLD cases that are characterized by TDP-43 inclusions can be passed from one generation to the next, as a result of mutations in another protein called progranulin (GRN). Using post-mortem brain tissue from 515 patients with TDP-associated FTLD, the team found that these patients had multiple genetic variations called SNPs in common in a region on chromosome 7 containing the protein TMEM106B, compared to over 2,500 disease-free controls.

From this, the team concluded that the TMEM106B gene variants confer a higher genetic risk for all FTLD-TDP patients, as well as in the subset of patients with GRN mutations. What's more, alterations in levels of TMEM106B protein in the brain may be directly or indirectly involved in causing FTLD.

How TDP-43, GRN, and TMEM106B proteins might normally interact in brain cells and be disrupted in FTLD remains to be deciphered. Nevertheless, the discovery of TMEM106B is an important step toward a better understanding of FTLD. The team plans to sequence the TMEM106B segment of chromosome 7, and in parallel, study the normal functions of TMEM106B.

SOURCE University of Pennsylvania School of Medicine

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

Predicting progression of Alzheimer’s disease

There is considerable variability in progression rates among Alzheimer’s disease (AD) patients. Patients and families frequently ask clinicians to prognosticate regarding expected rates of cognitive and functional decline, and clinicians have little basis for making such predictions.

We have shown that it is possible to reliably estimate early AD symptom onset, and together with baseline MMSE score, to calculate a rate of progression at the initial assessment (the preprogression rate).

The use of a rate to estimate early progression gives information on severity, but also on how long it took for the patient to reach the current severity level, which reflects that individual’s disease characteristics better than a severity score alone. However, it is not clear whether patients maintain a similar rate of decline throughout the course of their disease or change trajectories over time, due to endogenous or exogenous factors (such as treatment).

Demonstrating the predictive value of the calculated pre-progression rate would be valuable for patient and family counseling, as well as for providing a research marker of phenotypic variability to validate biological markers of progression. Further, the ability to model group progression of AD patients is essential for designing disease-modification studies of new AD treatments, and pre-progression might be an important baseline variable to take into account in the analysis of clinical trial data

The Baylor Alzheimer’s Disease and Memory Disorders Center has followed a cohort of AD patients for up to 15 years, with detailed clinical and neuropsychological data obtained at baseline and at annual follow up visits which are maintained in an ongoing electronic data base.

We used these data to answer the following questions: 1) does a pre-progression rate calculated at the initial assessment predict subsequent performance in specific cognitive and functional domains during follow up, and 2) is the pre-progression rate associated with overall survival, after adjustment for relevant covariates?

This research study was published in BioMed Central's open access journal. Go here to read Predicting progression of Alzheimer's disease.

Rachelle S Doody, Valory Pavlik, Paul Massman, Susan D Rountree, Eveleen Darby, Wenyaw Chan

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

Dealing with Difficult Behavior Caused by Dementia and Alzheimer's

By Bob DeMarco

I often get asked question about how I deal with my mother when she evidences erratic behavior.
I read these six coping strategies for dementia-related behavior problems some time ago. Dr. Peter Rabins is a renowned Johns Hopkins neurologist. He touches on the following behaviors: outbursts, agitation, aggression, wandering, vocalizations, hoarding and hiding things, and inappropriate sexual behavior.

People with dementia often exhibit behaviors that are frustrating, embarrassing, and sometimes even dangerous to the caregiver and others.

These may include angry outbursts, agitation, aggression, wandering, vocalizations, hoarding or hiding things, and inappropriate sexual behavior. For many caregivers, these difficult behaviors are the most challenging and exhausting aspect of caring for a person with dementia.

Unfortunately, the available medications to treat Alzheimer’s disease have little effect on behavioral problems.

In their groundbreaking book on Alzheimer’s caregiving --The 36 - Hour Day -- Peter Rabins, M.D. (author of the Johns Hopkins Memory White Paper), and Nancy Mace discuss the six R’s of managing difficult behavior in people with dementia. They are:

* Dementia Strategy 1 -- Restrict. First, calmly attempt to get the person to stop the behavior, especially if the behavior is potentially dangerous.

* Dementia Strategy 2 -- Reassess. Consider what might have provoked the behavior. Could a physical problem (toothache, urinary tract infection, osteoarthritis) be behind the agitation or anger? Is a particular person or the noise level in the room triggering the negative reaction? Could the time of day and fatigue be contributing to the problem?

* Dementia Strategy 3 -- Reconsider. Put yourself in the dementia patient’s shoes. Try to imagine what it must be like to not understand what is happening to you or to be unable to accomplish a simple task. Consider how frustrating or upsetting the current situation or environment might be for a person with dementia.

* Dementia Strategy 4 -- Rechannel. Try to redirect the behavior to a safer, less disruptive activity. For example, if the person constantly disassembles household items, try finding simple unused devices, such as an old telephone or a fishing reel, that can be taken apart and put back together repeatedly. For someone who hoards or hides things, put away valuables and replace them with an array of inexpensive items. Distraction often works well to curtail disruptive repetitive behaviors and restlessness. For example, try asking the person you’re caring for to “help” with simple tasks, such as holding spoons or potholders while you cook.

* Dementia Strategy 5 -- Reassure. The demented person’s brain injury and the resulting confusion and frustration can lead to anger, anxiety, and outright fear in certain situations. Calmly reassure the person that everything is okay and that you will continue to take care of him or her.

* Dementia Strategy 6 -- Review. After an unsettling experience with your loved one, take time to review how you managed the problem and what you might have done differently. Think about what may have triggered the problem, how it might have been avoided, and what you might try the next time a similar situation arises. It also helps to create a patient-friendly environment. This might include soothing music in the background; pictures, words, or arrows to help orient the person in the house; or a secure place to sit outside or walk in the backyard.

Source John Hopkins Health Alerts