Posted by Jim Kimzey on Tue, Oct 05, 2010
Caring.com launched a new tool today that is designed to help Alzheimer's family caregivers better understand the disease at each stage of progression.
Steps & Stages is an interactive guide, support system, and customized e-mail newsletter that delivers detailed, stage-specific advice for caregivers helping a loved one with Alzheimer's and other types of dementia.
Caring.com conducted a survey of more than 1,100 caregivers and learned that 61% of those caring for an aging parent or other loved one with Alzheimer's reported that the actual diagnosis came one or more years after symptoms first appeared. Furthermore, nearly 50% said that, once the patient was diagnosed, they were still unsure of the stage of Alzheimer's their loved one was in.
Caring.com's Steps & Stages helps caregivers navigate the overwhelming Alzheimer's journey, from identifying the stage of progression, to understanding which symptoms to expect and how to cope with them, week by week. This new tool also offers Stage Groups, where communities of caregivers whose loved ones are at a similar stage can connect online and learn from one another.
"Caring for someone with dementia can be such a difficult and lonely experience," said Andy Cohen, cofounder and CEO of Caring.com. The research backs this up with 49% of caregivers saying that their role as a caregiving for an Alzheimer's patient is their single biggest source of stress, ahead of the economy and their own health. "We've created tools to help caregivers reduce stress and find comfort in understanding what they're experiencing," added Cohen. "Steps & Stages is about what they are experiencing today, along with guidance about what to expect next."
To use Steps and Stages, caregivers begin by completing a brief Stage Assessment that Caring.com uses to create a Custom Care Guide. This Custom Care Guide and weekly newsletters then offer tips on how to handle different symptoms. As new symptoms appear, caregivers can update their Care Guide, and the information and advice changes dynamically.
The staging system was created in close consultation with Caring.com's senior medical editors: Leslie Kernisan, M.D., MPH, a practicing geriatrician and clinical instructor at the University of California, San Francisco, geriatrics division; Ken Robbins, M.D., a geriatric psychiatrist and clinical professor of psychiatry at the University of Wisconsin, Madison; and other experts, including Lisa Gwyther, MSW, associate professor in psychiatry at Duke University Medical Center and coauthor of The Alzheimer's Action Plan: A Family Guide.
Steps & Stages can be used today with the Stage Assessment, Custom Care Guide, and weekly e-mail newsletter. Additional community and content features will be added over the next few months.
Posted by Dildora Jamanova on Fri, Sep 17, 2010
Alzheimer’s disease is named for German physician Alois Alzheimer, the first doctor to describe the disease in 1906.
In his research, Dr. Alzheimer identified an 'unusual disease of the cerebral cortex' in one of his female patients. This disease caused memory loss, disorientation, hallucinations, and eventually her death at the age of 55. Using a new type of stain that only he had access to, Dr. Alzheimer observed various abnormalities of the brain and was able to identify nerve tangles which had never previously been described.
The disease is also called Alzheimer disease, senile dementia of the Alzheimer’s type, or just Alzheimer’s. Even though the disease was discovered over 100 years ago, scientists still do not know what causes Alzheimer's.
We do know:
- Alzheimer's is a progressive and fatal brain disease—not a normal part of aging—that affects approximately 5.3 million Americans. This disease destroys brain cells and it gets worse over time.
- Alzheimer's is the most widespread type of dementia, accounting for 50% to 80% of all cases of dementia.
- There is no cure.
According to the Alzheimer's Association, the brain has 100 billion nerve cells (neurons), which communicate with each other to form networks. Some networks are involved in thinking, learning and remembering; other networks help us see, hear, smell, and move our muscles. With Alzheimer’s disease, as in other types of dementia, increasing numbers of brain cells deteriorate and die.
The film below clearly explains Alzheimer’s disease in just 3 minutes. It was produced by AboutAlz.org. It shows a typical progression of the disease, how Alzheimer's destroys parts of the brain, and how that destruction affects the person living with the disease. This video is important for family caregivers because it helps you understand the different stages of the disease and why your loved one's behavior is changing over time. However, it is important to note that Alzheimer's does not take the same course in all patients (as implied by the video), and many patients will exhibit symptoms in a different order than described in the film.
Video Source: www.AboutAlz.org Photo Credit: Bonio
Posted by Jim Kimzey on Wed, May 19, 2010
Alzheimer's Association Releases New Report
The Alzheimer's Association released a new report today that highlights the urgency of finding new and better treatments for Alzheimer's disease. Titled Changing the Trajectory of Alzheimer's Disease: A National Imperative, the report forecasts that caring for Alzheimer's patients will cost the United States $20 trillion over the next 40 years in the absence of disease-modifying treatments.
Growth in Alzheimer's Costs
The report, which examines the current trajectory of Alzheimer's costs using a financial model developed by the Lewin Group, shows that the number of Americans over 65 years old who have this form of dementia will grow from 5.1 million today to 13.5 million by 2050.
Harry Johns, President and CEO of the Alzheimer's Association, commented, "We know that Alzheimer's disease is not just a 'little memory loss.' It is a national crisis that grows worse by the day. Alzheimer's not only poses a significant threat to millions of families, but also drives tremendous costs for government programs like Medicare and Medicaid."
The total cost of care in the U.S. will soar from $172 billion in 2010 to more than $1 trillion in 2050, with Medicare's portion of these costs increasing by more than 600%, from $88 billion to $627 billion. Medicaid's share of these costs will grow by over 400%, from $34 billion to $178 billion. (These costs do not include the uncompensated Alzheimer's home care provided by family caregivers.) One factor driving the explosive growth in costs is that nearly half (48%) of the 13.5 million people projected to have the disease in 2050 will be in the latest stages of the disease, when expensive 24-hour care is often necessary.
Averting Disaster
The two best hopes for improving lives and controlling costs are:
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Delaying Onset of the Disease--Even modest improvements in delaying the onset of Alzheimer's would have a big impact. The report modeled what would happen if a treatment breakthrough, starting in 2015, could delay onset of the disease by five years (this would be similar to anti-cholesterol drugs preventing heart disease). In that scenario, 1.6 million fewer Americans over 65 would have the disease in 2020, and 5.8 million fewer in 2050. This development would save Medicare and Medicaid $42 billion per year in 2020 and $362 billion per year in 2050.
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Slowing Progression of the Disease--A treatment breakthrough that slowed disease progression would also lead to a dramatic reduction in human suffering and cost of care (this would be similar to recent developments in managing HIV/AIDS and some cancers). In the scenario modeled by the Lewin Group, the number of Alzheimer's patients in the severe stage of the disease would drop by 1.3 million in 2020 and 5.3 million in 2050. Annual savings to Medicare and Medicaid would add up to $34 billion in 2020 and $180 billion in 2050.
Investment in Research Needed
To avoid this bleak future, the Alzheimer's Association is working to enact legislation that would increase investment in research. Johns added, "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. For the human effects and the country's fiscal future, we must change the trajectory of the Alzheimer's crisis."
Posted by Jim Kimzey on Mon, May 17, 2010
Younger-Onset/Early-Onset Alzheimer's Disease
"Younger Onset" or "Early Onset" are terms used to describe a diagnosis of Alzheimer's disease in people younger than the age of 65. "Early onset" refers to the age of the person, not the stage of the disease. People with early-onset Alzheimer's could be in the early, middle or late stages of the disease.
Experts estimate that there are over 500,000 people in the U.S. in their 30s, 40s, and 50s who are living with Alzheimer's disease. Having Alzheimer's at such an early age puts unique pressures on families because the newly diagnosed patient may have a job, young children, and inadequate savings to deal with an early retirement from the workforce.
This video describes one family's experience, including the early symptoms, dealing with the diagnosis, providing assisted living at home, and living a full life in spite of Alzheimer's.
Posted by Jim Kimzey on Fri, Apr 09, 2010
Reducing Alzheimer's Risk Through Computer Use and Exercise
A new study by the Mayo Clinic may point to important steps that individuals can take to reduce their risk of developing Alzheimer's disease. The study found that using a computer and engaging in physical exercise may help protect against mild cognitive impairment (MCI), a brain disorder that affects nerve cells important for thinking.
Individuals with MCI can function reasonably well in everyday activities, but they often have difficulty remembering critically important recent events and future engagements. Most (but not all) patients with MCI develop a progressive decline in their thinking abilities over time. Alzheimer's disease is usually the underlying cause.
“Our study found that engaging in physical exercise at any frequency, be it once a week or five times a week, and engaging in mental activities, computer use in particular, seem to have a joint effect in protecting against mild cognitive impairment. This means that when you add the benefit of physical exercise and the benefit of computer use together, the joint effect is more than the expected arithmetic sum,” says Yonas Endale Geda, M.D., a Mayo Clinic neuropsychiatrist and the study’s lead investigator.
As part of this study, Dr. Geda and a research team at the Mayo Clinic randomly identified 926 individuals with ages ranging from 70 to 90 years old. Of those, 109 had MCI, and 817 showed normal cognitive ability. The team conducted surveys to gather data on the individuals’ physical exercise, cognitive activities and caloric intake in the past year. After making adjustments for age, sex, education, depression, other medical issues and caloric intake, they found that any amount of moderate physical exercise (such as brisk walking) and any amount of computer use were separately linked to a reduced risk of MCI.
In previous studies, both physical exercise and cognitive activities (including using a computer) were separately found to help reduce the risk of MCI. In this new study, combining these two activities appears to be even more beneficial.
Other members of the Mayo Clinic research team included Rosebud Roberts, M.B., Ch.B; David Knopman, M.D.; Teresa Christianson; V. Shane Pankratz, Ph.D.; Bradley Boeve, M.D.; Eric Tangalos, M.D.; Robert Ivnik, Ph.D.; Walter Rocca, M.D.; and Ronald Petersen, M.D., Ph.D..
The results of this study will be presented at the American Academy of Neurology Annual Meeting in Toronto on April 15.
Video—Exercise and Computer Use May Prevent Cognitive Impairment
Photo courtesy of Ed Yourdon.
Posted by Jim Kimzey on Thu, Mar 25, 2010
This ABC News report covers three recent studies on Alzheimer's disease. The studies concluded:
- Senior citizens who drink alcohol in moderation—one to two drinks per day—may reduce their chances of getting Alzheimer's disease by about 40%.
- Another showed no benefit to taking a DHA supplement (also known as Omega-3 fish oil).
- A third study showed that soldiers who suffered post traumatic stress disorder (PTSD) in the past, have a 1.8 times greater chance of developing Alzheimer's disease in the future.
ABC News Video
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Posted by Jim Kimzey on Thu, Mar 18, 2010
Driver Safety—Help for Alzheimer's Family Caregivers
Driver safety is a big concern for family caregivers because many dementia patients resist giving up the car keys. Most experts recommend that caregivers enlist the doctor to be the bad guy with a formal evaluation of the patient's driving ability.
However, the problem goes beyond just Alzheimer's patients. Auto injuries are a leading cause of injury-related deaths for all seniors older than 65, and the death rate for drivers 85 years and older is nine times higher than the fatality rate of drivers 25 to 69 years old.
Physicians now have new guidelines on how to assess and counsel their elderly patients. The American Medical Association has just released the Physician's Guide to Assessing and Counseling Older Drivers. This 246-page book includes guidance on:
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- Red flags that might indicate a driver safety problem
- Assessing functional ability
- Physician interventions
- Ethical and legal responsibilities of the physician
- State licensing and reporting laws
- Medical conditions and medications that may affect driving
- CPT billing codes the physician can use to get reimbursed by Medicare
- Patient educational materials
It's a nice, comprehensive package that is designed for physicians, not the family caregiver. However, it does have a useful checklist called, "Am I a Safe Driver," which you can download from this blog post.
For more information on driver safety and how to get the keys away from a resistant Alzheimer's patient, visit the Alzheimer's Tool Box™.
Posted by Jim Kimzey on Tue, Mar 16, 2010
For Alzheimer's Family Caregivers
When you're providing Alzheimer's care at home, your loved one may not be able to tell you how he or she is feeling, so download this document, print it, and keep it handy for those times when he or she pushes the limits of your patience. The author is unknown.
- Please be patient with me — Remember that I have an organic brain disease for which I have no control.
- Talk to me — Even though I cannot always answer you, I can hear your voice and sometimes comprehend your words.
- Be kind to me — For each day of my life is a long and desperate struggle. Your kindness may be the most special and important event of my day.
- Consider my feelings — For they are still very much alive within me.
- Treat me with dignity and respect — As I would have gladly treated you.
- Remember my past — For I was once a healthy, vibrant person full of life, love and laughter with abilities and intelligence.
- Remember my present — I am a fearful person who misses my family and home very much.
- Remember my future — Though it may seem bleak to you, I am always filled with hope for tomorrow.
- Pray for me — For I am a person who lingers in the mists that drift between time and eternity. Your presence may do more for me than any other outreach of compassion you can extend to me.
- Love me — The gifts of love you give will be a blessing from which will fill both our lives with light forever.
Posted by Jim Kimzey on Thu, Mar 11, 2010
In this video from the NBC Nightly news, the wife of an Alzheimer's patient describes the impact that her husband's dementia has had on their lives, including:
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- Warning signs that led to his diagnosis
- Changes in her husband's abilities
- Her role as a caregiver in providing assisted living at home and the need to take on new tasks
Posted by Jim Kimzey on Thu, Mar 11, 2010
The Alzheimer's Association has just released an updated report on Alzheimer's disease. There are an estimated 5.3 million people suffering from Alzheimer's in the U.S., and that number is expected to grow by over 50% over the next 20 years. The growth in new cases is having an even greater impact on minorities, particularly African Americans and Hispanics.
Minorities Hit Hard by Alzheimer's—NBC News Report