Dimebon News and Information

The Alzheimer’s Association has a new tool to help families keep track of their loved ones.

It’s designed to prevent patients from wandering, which about 60 percent of Alzheimer’s patients do at some point.

The group’s new “Comfort Zone” system uses a transmitter and a web-based mapping system. Families get a text message or an email if their loved ones leave a virtual perimeter zone.

The system could prevent accidents among the five million Americans who have Alzheimer’s disease.

AN over-the-counter Russian antihistamine drug said to stop Alzheimer’s disease will soon be available to eligible sufferers in Newcastle.

The drug, Dimebon, is being tested in Newcastle and is heralded as one of the first drugs that has treated the disease rather than symptoms.

A recruitment drive to involve Hunter Alzheimer’s sufferers is in full swing with Professor Peter Schofield, who is conducting the trial, urging patients to strongly consider volunteering for the ground-breaking research study.

Dimebon was sold as a cure for allergies in Russia 10 years ago until it was discovered to have good effects on Alzheimer’s sufferers.

“This is a very exciting medication,” Professor Schofield, who will conduct the trial from John Hunter Hospital, said.

While a cure was still many years away, this was the first drug that had fought the underlying progression of the disease and preliminary tests had shown good results, he said.

Existing medications provided only modest, transient benefits in fighting symptoms, Professor Schofield said.

The trial, dubbed the Concert study, will enrol 1050 patients across 100 sites in the United States, Australia, New Zealand and Western Europe.

The trial will test the effectiveness of a mixture of leading Alzheimer’s drug Aricept with Dimebon, to slow the progression of the disease.

By Ray Segebrecht

Every November, Brad Rolph thinks of his grandfather Ed. Rolph, Olathe senior, said Ed Rolph always lived a half-day’s drive away in St. Louis, and the two would seize the Thanksgiving holiday to catch up on football and cards — their two favorite pastimes. Since Rolph enrolled at the University, however, he said a new distance had come between them.

Ed, once a hearts master, now struggles to understand the card game. Last Thanksgiving, he could no longer connect the successful Ohio State Buckeye football team to his alma mater. Ed has Alzheimer’s disease.

“He’s gotten a lot worse,” Rolph said. “He probably won’t remember me the next time I see him.”

When a person is diagnosed with Alzheimer’s, damage is often already significant and deterioration of the mind progresses quickly, said David Johnson, assistant psychology professor and Alzheimer’s research specialist. This fall, however, Johnson released findings that show the illness can be detected up to seven years prior to official diagnosis. These “pre-clinical Alzheimer’s” patients, he said, provide new hope for future treatment of the disease.

“We have to detect it earlier and interfere with it earlier because by the time we see frank, functional decline in an individual, there’s so much brain disease that has occurred that it’s unlikely we’re going to find any medical intervention that would reverse that,” Johnson said.

Johnson, who released his findings this fall with three of his former colleagues at Washington University in St. Louis, said his findings were part of a study that has lasted longer than 25 years and that he has worked on for a decade. He said he and his colleagues found evidence of “pre-clinical Alzheimer’s” in visual tests. Patients who will be diagnosed with Alzheimer’s within the next couple of years, he found, consistently have difficulty with tasks such as copying complex shapes and processing new codes.

“I hope this paper is a wake-up call,” Johnson said. “There is such a thing as pre-clinical Alzheimer’s disease. There are subtle changes that can happen before the more serious changes, and they’re across the board.”

Johnson said he made his discoveries by looking backward through the experiment at the performances of 444 volunteers on tests. There was a subtle but significant difference in performance, he said, between those who would later develop Alzheimer’s and those who wouldn’t.

Johnson said he thought the most important step in continuing Alzheimer’s research would be to identify and treat these patients to try to delay the onset of the full disease. He said currently the only treatment was medication. Most patients have declined too much mentally by the time they are diagnosed to be able to handle cognitive exercises that help prevent the illness. He said he thought these exercises, however, might be useful for treating people with early “pre-clinical Alzheimer’s.”

“We’ll hopefully see something like that in the near future,” Johnson said. “I hope that my research is clinically relevant. That’s what drives me to do what I do — to figure out how to delay the disease.”

Dementia, the category of illness which includes Alzheimer’s disease, can take on various forms, Johnson said. But he said Alzheimer’s, the most common type, accounts for 80 percent of all dementia cases.

“It is the elephant in the room as far as age-related memory disorders,” Johnson said. “It is by far and away the most important to society to be able to diagnose and treat because of its prevalence in the population.”

Kitty Shea, director of the Harbor House Memory Care residence in Lawrence, said her guests struggle with different kinds of dementia but said Alzheimer’s was the most frequent.

Johnson, who has committed his professional career to working at the forefront of research on the disease, said his first experience with the illness came when he was 10 years old.

His grandmother, Florence Johnson, would treat him every Tuesday to a grandmother-grandson dinner in Washington D.C., Johnson said. But in the subsequent six years, he watched his grandma develop Alzheimer’s disease. She became unable to take him through the city and eventually didn’t even remember where she was.

“That was a very different shrewd and sharp woman who lost everything cognitively,” Johnson said of Florence, who died at age 92 when he was 16. “It’s hard to see someone you care about suffer.”

Johnson said he hoped more people, both who have and haven’t lost love ones to the disease, would take up its research. He said part of why he believed research has come so slowly with the disease was that fewer and fewer people were studying the field.

“In the United States the older adult population is booming and America is growing older and we have not done our homework,” Johnson said. “We know very little, relatively speaking, compared to pediatrics or substance abuse.”

Rolph said even though there was no cure to Alzheimer’s and his grandpa, Ed, was still declining, he tried to stay positive and focus on what he still had.

“I still cherish all the moments that I have with him,” Rolph said. “It’s no different. The last couple years that he’s had Alzheimer’s hasn’t affected my perspective of him. I still think he’s a great guy.”

By Dr. Ken Dychtwald

This month is National Long Term Care Awareness Month. Based on thirty-five years working in the field of aging, I have reached some personal conclusions about long term care and its funding. Here goes.

Learning from my mom and dad’s experience.
I grew up in the 1950s and 60s in a close-knit, hard-working family. My parents both worked full-time to pay the bills, send my brother and me to college while saving frugally for their own retirement nest egg. Still very much alive at 86 and 89, my mom and dad live in a retirement community in South Florida. I live 3,000 miles away with my wife and kids in California, while my older brother lives in New Jersey - near where we grew up.

Today, my dad has diabetes and heart disease and has been blind for a decade due to macular degeneration. While still sharp as a tack, and ready for a political argument 24/7, he can’t drive, read or handle many of the normal activities of daily living without a full-time aide. My mom - who remains the “heart” of our family - also requires ongoing assistance. She has COPD - which means she must spend three hours a day on a nebulizer. In the past several years, she has had a heart bypass surgery, a hip replacement and is grappling with memory loss.

Around a decade ago, when it became obvious that living independently in their home was becoming difficult, my brother and I grew concerned because we saw that age and chronic disease were starting to take a deep toll. We knew that Medicare didn’t pay for long term care and Medicaid was for the poor, so our anxiety was high. However, I was very relieved when my dad told me that they were going to activate the benefits of the long term care insurance policies they had bought five years before, to get the extra help they needed so they could continue to live independently.

The good news is they are currently living surprisingly normal lives in their own home, thanks to the services of their care coordinator as well as the terrific aide who comes to their house six days a week, helps manage their household, does the grocery shopping, prepares meals, takes them to their various doctors appointments, cares for them - and generally has allowed them to stay together in their home, just like they always wanted.

If not for their LTC policy, my folks (who have recently celebrated their 67th anniversary!) would most likely be living in some sort of institution - probably a nursing home. And because of their different conditions, they might have been forced into separate facilities. My brother would probably have given up his life in NJ to look after them, and my wife and I would probably be paying for their care which by now would have cost nearly $500,000 - a small fortune.

As a gerontologist, I know that paying out-of-pocket for eldercare can be very costly. The median cost for home care is $42,000/year and a private room in a nursing home costs on average $74,000/year (for information on the cost of care where you live, here’s a helpful resource: www.genworth.com/costofcare). Some people have to sell all their assets to cover the cost of LTC - and many others become impoverished while paying for LTC expenses. I recently read how some social workers are advising elder men and women to divorce their spouse should their partner’s health start to fail. By doing so, they can detach from the financial responsibilities of caring for their loved one - and have Medicaid pick up the tab. This is a shameful state of affairs.

My folks say that they purchased their policies so that they wouldn’t be a burden on us - and while we would do almost anything for them, we are thankful for their proactive decision to purchase their LTC insurance years ago.

The Coming Caregiver Crunch
Over the past century, life expectancy has vaulted from 47 to 77….and it continues to rise. But, the longer you live - the longer you’ll live. So a 65 year old today has an average life expectancy of nearly 85 years! For many, this is a terrific circumstance - more years to learn, work, play and enjoy time with those we love. However, with longer lives, there’s also the increased possibility of health problems along the way. Nearly 70% of all people over 65 will need some long term care in the years ahead. And we’re talking about our parents and soon us!

Today, three quarters of all care is provided informally by loving and supportive family members outside of hospitals, nursing homes and other institutions. This caregiving might involve grocery shopping, house cleaning or helping a loved one who is recuperating from surgery to bathe, dress or visit their doctor. Or, it might even require 24/7 care for a loved one with Alzheimer’s.

But there will soon be a shortage of family caregivers for four reasons:

1. Fewer children to provide care. Today’s elders had around four children per couple, while boomers have had only two.
2. Family members may not live nearby due to increased mobility and relocations.
3. Escalating numbers of singles without a spouse to care for them, due to rising divorce rates and widowhood (women outlive men by more than five years).
4. Highest rates - ever - of both middle-aged men and women working. And so, the adult daughter or son might need (or wish) to work.

Long Term Care is not necessarily a comfortable topic…even for a gerontologist!
So, when my wife Maddy and I stopped to think about it five years ago, we considered what might happen to our lives if sometime down the road we needed extended care. While we realized that there were costs associated with purchasing LTC insurance, the potential financial and emotional costs to ourselves and to our children of not purchasing them were far higher. Although my folks bought their policies in their 70s, we decided to buy ours in our early 50s, when the rates are lower and the likelihood of qualifying is far higher. And, we also took advantage of the special discounts for couples. In addition, because we are small business owners, around ¾ of our premiums turned out to be tax-deducible.

After 35 years on the aging front lines, my personal rationale for why purchasing long term care insurance makes sense:

1. To maintain independence and to avoid burdening your children - financially or emotionally.
2. To assure your ability to get quality care in the setting you choose.
3. To protect your retirement assets and stay in control of your money and your life.
4. To protect your spouse’s lifestyle and financial security, while you’re alive and afterwards.
5. To protect inheritance for your children and grandchildren.

While I don’t think everyone needs LTC insurance, I do believe that everyone should have a plan for how they’re going to be looked after should they needed extended care, and how they’re going to pay for it without burdening their family.

Some helpful resources:
I’ve just posted an audio recording for the media on this subject, which you might find helpful at www.agewave.com/Dychtwald_media_briefing_on_LTC/. And, I have found the following websites useful as resources to help craft a satisfying long term care plan:www.longtermcare.gov, www.caringtalk.com, and www.ResearchLTC.com.

I’d welcome all of your thoughts, ideas and questions about these themes.
Ken Dychtwald, Ph.D. is a psychologist, gerontologist and author of sixteen books on aging, life transitions, and retirement-related issues including Age Wave, The Power Years,and his new book, With Purpose: Going from Success to Significance in Work and Life (with Daniel J. Kadlec, Collins Life; 3/09). The founding CEO of Age Wave, he lives with his wife and children in the San Francisco Bay Area.

By Collin Tong

It was more than ten years ago, in 1999, when I first discovered that my wife was having serious problems with short-term memory.  We were on a walking tour of Provence in southern France when I noticed that Linda had forgotten to bring several items for our vacation.After we arrived in Paris, we spent a half a day wandering around the city looking for stores to buy contact lens solution, sunscreen, toothpaste, and a face cloth.

I didn’t think anything was amiss until we returned to Seattle that October.  Unanticipated events had dealt us a major blow when her younger sister, who had recently had a kidney transplant, died from complications during a routine dialysis.  Linda’s memory lapses only increased during her protracted grieving process.

Coworkers noticed that Linda was having more difficulty at Seattle City Light where she had worked for 20 years as an energy conservation analyst.  A normally well-organized person, she forgot her appointments and drove colleagues to distraction by endlessly repeating questions.

This was the same Linda who had been so meticulous about gardening, cooking, taking care of the family finances, and just about every aspect of our 38 years together as a married couple.  She was always upbeat, vivacious, with an effervescent gleam in her eyes, and the smile that won my heart when we first met in 1971.

Linda took an extended leave-of-absence so that I could take her to see a neurologist, clinical psychologist, and other dementia specialists.  All had reached the same conclusion, namely that her short-term memory loss stemmed from clinical depression, a diagnosis that later proved to be incorrect.

I continued my communications director job at Washington State University and put Linda’s memory problems in the back of my mind.  I didn’t realize it at the time but I was in denial and slow to face the dreaded possibility that she might be suffering from something more consequential than depression.  Indeed I was only living through the stages of grieving itself: denial, despair, frustration, and increasing isolation from family, friends, and even the person I was caring for.

My normal way of dealing with terminal illness was to not deal with it. Like many people who care for a loved one with dementia, I knew little about Alzheimer’s and was hesitant to learn more.  I went to bookstores to scan medical books about the disease, but the more I read the less hopeful I became for any improvement in Linda’s condition.

The daily press of work left me little time to focus on her disability.  Instead, I took on additional responsibilities, which was a way of coping with the demands of her slow but irreversible deterioration.  My mother in San Francisco had died two years earlier of pancreatic cancer, and I was still in the throes of mourning her death.

As time went on, Linda’s behavior grew more erratic.  Our lives became more challenging as her grief over the passing of her sister continued unabated. Overburdened by the demands of work and caregiving, I took early retirement from my university job.

My growing acceptance of Linda’s memory problems notwithstanding, I could not ignore the signs of her cognitive decline.  By then, our familiar world was slowly dissolving.  She was 57 years old in 2005 when she was diagnosed with early-onset Alzheimer’s disease.  The news devastated our families and friends.  Our lives were about to change profoundly.

Shortly after her diagnosis, I called the Alzheimer’s Association 24/7 Helpline in Seattle and spoke with a very helpful staff employee, Karl Thuneman.  Karl and I soon realized that we had been colleagues at the Eastside Journal-American newspaper in Bellevue many years ago.  But his dedication to assisting me and Linda through our unexpected life crisis was obvious long before either of us realized we had a connection.

The physical and emotional toll of being a full-time caregiver are daunting.  However much one tries to prepare for being a caregiver, nothing adequately prepares one for the challenges of caring for a loved one.  I felt overwhelmed with the daily chores of cooking, cleaning, shopping, paying bills, mowing the lawn, doing the laundry, or just attending to the daily necessities of keeping our lives afloat.

We went to church less frequently and began skipping social activities, and even the unthinkable, missing my nephew’s wedding in California.  Our absence was felt all the more keenly by our friends because we had been so active in the community before her debilitating illness.

Fortunately, our families in the San Francisco Bay Area and southern California helped us tackle the financial, legal, and related issues such as helping Linda to secure her Social Security disability and retirement pension, my health insurance, our living trust and power of attorney, and health care directive.  Linda’s brother and family spent a week with her when I attended my Peace Corps reunion in New York.

Friends brought over hot meals and cared for Linda whenever I ran errands, visited friends, or needed a break.  One retired couple helped mend a broken fence, fix a leaky faucet, and organize our disheveled home.  Another bought a new carpet.  Our church organized a weekend work party to mow the lawn, and beautify our weed-strewn garden.  Still another even helped with more mundane tasks like doing our laundry.

Through trial and error, I learned that while being a caregiver is challenging, help is always available if one is intentional about seeking it.  One only has to reach out to others.

Self-care is of utmost importance.  Going out to lunch with friends, seeing a Mariners game, or just taking walks were replenishing.  Equally important is developing a strong network of supportive friends.  Fortunately, the Alzheimer’s Association became our lifeline, along with our faith community at University Temple United Methodist Church.  The Alzheimer’s Association put together a comprehensive care plan for Linda.

Most important of all for me was accepting the inevitable feelings of grief and loss as Linda changed, and acknowledging the things that were beyond my control while making decisions about things I could control.

At the encouragement of a social worker friend, I joined an early-onset Alzheimer’s support group in Seattle.  Additionally, the Alzheimer’s Association’s Connections program helped put us in touch with a placement specialist to find Langland House, an adult family home located less than ten minutes away from our home in the Sunset Hill neighborhood of Ballard.

That year, I volunteered with the Alzheimer’s Association’s 2008 Champions advocacy campaign, began getting involved in advocacy work and staffed an information booth at the Memory Walk, the association’s annual fall fundraising campaign.  Through the Association, I have met some wonderful, dedicated people.  The Association has become an integral part of our support system.  In a very literal sense, it became a part of our extended family.

Sadly, ours is not a unique experience.  More and more people under 65, that is, baby boomers, are getting early-onset Alzheimer’s disease.  At last count, Washington state has more than 110,000 people with Alzheimer’s. About 70 percent of those individuals live at home, and 70 percent are cared for by unpaid caregivers, mostly family and friends.

Worldwide, an estimated 35.6 million will be living with dementia in 2010, a number that is estimated to nearly double every 20 years, according to the 2009 World Alzheimer’s Report.

Because of the unrelenting demands of 24/7 caregiving, taking good care of one’s physical and emotional well-being is all too often given short shrift.  Stress and anxiety inevitably lead to social isolation and the downward spiral of frustration, despair and hopelessness.

Fortunately, many organizations exist that provide respite care.  I helped enroll Linda at ElderHealth Northwest, an adult day health program located at the Ravenna neighborhood, one of several sites in Seattle, where skilled and dedicated care professionals engage her in daily social interaction that helps maintain her health.  Some 36 adult day health centers offer services throughout Washington state.  In King County alone, ElderHealth NW serves about 1,400 elderly and disabled citizens.

Organizations such as Volunteers in America also provide invaluable respite care services.  In many instances, I turned to friends and family for assistance with taking care of Linda when I needed to take time out from caregiving.

Navigating the formidable challenges of caring for a loved one with dementia or Alzheimer’s disease need not be a private, solitary journey.  Indeed, as I learned, it is next to impossible to attempt to surmount those hurdles without reaching out to others.  Because of our extended network of family and friends who went the extra mile to be our lifelines and safety net, ours has been a life-transforming and life-affirming journey.

The same technology used for guiding military operations and giving directions is now helping people with dementia and Alzheimer’s disease and their loved ones.

The Alzheimer’s Association has developed a new program based on the Global Positioning System or GPS. It is a tracking device that is similar to a cell phone and can be worn on a belt or placed in a pocket or a purse. It will pinpoint someone’s exact location.

The device is also linked to a pre-programmed “comfort zone” that could be the GPS coordinates for your house, the boundaries of your neighborhood, or whatever you decide. If the person wearing the device leaves the “comfort zone,” the system alerts that person’s caregiver by e-mail or text message.

The Alzheimer’s Association says the program could be helpful for families since statistics show that 60% of people with Alzheimer’s wander away from home or other locations.

By BARBARA PARSONS

Alzheimer’s disease is a brain disease where healthy brain tissue degenerates. This causes a steady decline in memory and mental abilities. Alzheimer’s disease is the most common cause of dementia. Someone develops Alzheimer’s every 70 seconds. As many as 5.4 million people are living with Alzheimer’s in the USA.

Most of us notice some slowed thinking and occasional memory changes as we age. Serious memory loss and confusion are not part of the normal aging process. In Alzheimer’s and other types of dementia, increasing numbers of brain cells deteriorate and die, and symptoms develop.

Symptoms progressively worsen over time. One of the symptoms is memory loss. This is not the occasional lapses in memory, but routinely misplacing things and putting them in illogical locations, and forgetting conversations and family members’ names. The person may have difficulty finding the right word during a conversation. There can be difficulty balancing the checkbook or dealing with numbers. The person can experience a loss of sense of time or dates, or loss of recognition of familiar surroundings. The person experiences greater difficulty in decision making or planning. Routine tasks can become a struggle. There can be personality changes such as mood swings, distrust in others, stubbornness and social withdrawal.

There is no proven way to prevent the onset of Alzheimer’s. Keeping physically, mentally and socially active seems to reduce the risk of developing the disease. There is a slightly higher risk of developing the disease when a close relative has the disease. Women are more likely to develop the disease partly because they live longer. People with high blood pressure, high cholesterol or poorly controlled diabetes are also at a high risk.

People who have Alzheimer’s do not recognize that they have a problem. Family members usually notice the symptoms and arrange for a doctor’s appointment. Physicians use a variety of tests such as blood tests, neuropsychological testing and brain scans to distinguish Alzheimer’s from other memory losses.

Early detection and diagnosis are important for early treatment with medications that may slow the progression of the disease. There is no cure, but there are several medications that may improve the symptoms related to the disease. Some of these symptoms are wandering, anxiety, agitation, sleeplessness, depression or cognitive decline. Other treatments include proper nutrition, which includes eating lots of fruits, vegetables, whole grains and good fats. Body exercise can increase circulation to the brain and decrease depression. Avoiding smoking and managing stress is also effective. Brain exercises such as crossword puzzles and mental exercises may promote the growth of additional connections between brain cells and delay the onset of dementia.

There are day programs for people suffering from Alzheimer’s. If you are unable to provide 24-hour supervision for your loved one, a memory unit at a nursing home or assisted living facility may be an option. Family members can talk to a counselor or join a support group. The Area Agency on Aging can also help coordinate services.

Dealing with Alzheimer’s can be tough. But it does not mean you have to forget about the joys of living. There is a great deal of support, understanding and information available to people who are suffering from Alzheimer’s and their families. Surrounding yourself with people who care and learning about the disease can make this journey easier for everyone involved.

Source: WOWT.com

It is the seventh leading cause of death in the United States.

And more than 100,000 Nebraskans and Iowans have it.

It affects someone every seventy seconds and impacts families…husbands, wives, and children.

Alzheimer’s is a progressive brain disease destroying brain cells, causing memory loss and altering thinking and behavior.

Creighton Basketball Coach Dana Altman’s grandmother and his mother have Alzheimer’s disease.

“It is something that has deeply affected our family,” Altman said.

It’s a tough subject for Altman to talk about.

“Just remembering grandma and mom the way they were and it’s just kind of tough seeing them not to be able to be themselves and have the same type of relationship that you had with them when they were younger,” he said.

Altman shared his story at the Alzheimer Association Midland Chapter’s luncheon Wednesday.

“You hope that your parents stay sharp and they’re able to function well later in life but the reality is that Alzheimer’s affects a number of people and in varying stages and at different times in their lives,” he said.

Michelle Johnson can relate to Altman’s experiences.

Her mother Liz was diagnosed with Alzheimer’s two years ago.

It started with short term memory and communication problems.

“It’s similar maybe to having a stroke or having a tumor or maybe excessive stress and so we wanted to at least get it checked out and find out what was causing the problem,” Husband Terry Johnson said.
“I want to say I can pick up this, I can do this, I can help with this and we can cook together and not let it divide our family,” Liz Johnson said.

Michelle decided to get as involved in her mother’s life as possible.

“Its fun in that I’m building memories but of course I get sad when I think about the future but you only have the present so make it the best you can,” Michelle said.

There are more than 70 kinds of dementia and while researchers are still looking for a cure, there is help.

The metro area has 38 support groups aimed at helping caregivers cope with loved ones suffering from Alzheimer’s disease.

It’s common for patients in the final stages of Alzheimer’s disease to be admitted to a nursing home. However, despite having advanced illness and being very dependent, the natural history of these patients remains unclear.