“Silent Voice’s”… and Alzheimer’s Disease

November 6, 2010 by Alzheimer's Speaks

Norm McNamara

I just received from one of our readers, Norm McNamara,?this beautiful poem called “Silent?Voice’s”?and wanted to share it with you.??This poem has also made an impression?on me.? It is time to have a?poetry section?on the Alzheimer’s Speaks Resource Website.? If you have a poem regarding?your journey with dementia please submit via comments on this blog?and I will also add it to the resource website to share with others.? The site URL to the resource website is:

?www.AlzheimersSpeaks.com?

Now here is Norms Poem:

Silent Voice’s

By Norm McNamara

Silent voices shouting everywhere

Silent, yet still rising through the air,

Eyes that look but do not see,

Beating heart inside of me,

Forever wanting their life back,

No more wandering this lonely track,

To talk, to laugh, be understood,

To live their lives as they should,

One year there, next year gone,

Like the setting of the sun,

The Dementia Demon comes along,

Takes away your favorite song,

I have all this yet to come,

Vacant stare, body numb,

But to the end and from the start,

Place your hand around my heart,

Feel it beat inside of me,

Look in my eyes and you will see,

Happy scenes without a tear,

And my silent voice you will hear

Here? is your chance to meet Norm and learn a bit more about his journey with Alzheimer’s disease.? I think you will find this interview with BBC Radio Devon very interesting.? It is?about a drug that has worked wonders for him inearly stages.? Please take the time to watch.?

http://www.youtube.com/watch?v=aWTkWACwFWw

Posted in Alzheimer's Speaks Resource Website, Caregiver, Dementia, Find Opportunities within an Obstacle, Grief, Guilt, Hospice, Living with Alzheimer's disease, Sandwich Generation, Simple Pleasures, Speaker on Alzheimer's disease, Speaker on Caregiving, adult children, aging, alzheimer's disease, alzheimers, caregiving, caring for edlerly, caring for loved ones, caring for parents, elderly, gift ideas, loss, memory care, memory loss, nursing home, old, parenting parents, seniors | Tagged Lori La Bey, Norm McNamara, Alzheimer's Speaks | 2 Comments

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Studies Show Good Cholesterol May Protect the Brain against Alzheimer’s

Studies Show Good Cholesterol May Protect the Brain against Alzheimer’s (Minding Our Elders®)Minding Our Elders®Breaking the Isolation: Information, Support and Shared Experience for Caregivers and Seniors by Author, Columnist, Consultant and Speaker Carol Bradley BursackHomeArchivesSubscribeInterested In Sponsorship? Email CarolBulk Book Orders for "Minding Our Elders: Caregivers Share Their Personal Stories?" Email Carol MEDIA GUIDE CLICK HERE
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Wednesday, October 13, 2010Studies Show Good Cholesterol May Protect the Brain against Alzheimer’s

If you are over 50 and you see your doctor regularly, you are likely being told to get your cholesterol levels checked. Those of you with a family history of heart disease may get nagged at even a younger age. “Watch your weight.” “Watch your cholesterol.” “Exercise.” Don’t eat anything you actually like – oops, they don’t really say that, but often that’s how we feel after a chat with the doc.

Read more about good cholesterol protecting our brains from Alzheimer's:

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Posted on Wednesday, October 13, 2010 at 01:01 AM in Aging, Alzheimer's, Dementia, Health, News and Research, Tips for Seniors | Permalink

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Clearing up confusion over dementia symptoms, Alzheimer's

Let's clear up some confusion about "dementia" and "Alzheimer's disease." The words are sometimes used interchangeably, or people think that if they are told they have dementia that means they don't have Alzheimer's.

Dementia is not a specific disease. Dementia is simply a word for a group of symptoms that affect cognition and thinking. These symptoms can include:

ForgetfulnessLanguage difficultiesConfusion with time and placeDecreased judgmentPersonality changes

These symptoms can be caused by conditions that include underactive thyroid, vitamin deficiency, brain tumors and depression. Even certain medications can cause dementia symptoms.

If these conditions are present and treated, dementia symptoms often improve. However, if during an evaluation these reversible causes of dementia symptoms are ruled out then the probable cause may be due to a progressive, non-reversible disease such Alzheimer's, Lewy body dementia, frontotemporal dementia or vascular dementia. For a description of each of these causes, please see the dementia article in the See Also area below.

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Let’s Cream Alzheimer’s

It’s hard to believe that our “Let’s Cream Alzheimer’s” Ice Cream Social and Balderdash Championship is only a week away. We don’t expect to make a lot of money at the social; in fact, we are relying on free will donations. What we hope to do is raise awareness of Alzheimer’s and our Memory Walk, and have fun, of course.

The ice cream social is a new idea and a learning experience for us and has been somewhat of a challenge because our Memory Walk committee is so small. We will be depending a lot on our friends at Fairview, relatives, and the youth group at church. Never having had a social before, we aren’t sure how much ice cream we’ll need. We don’t know if people will show up. Will we have enough Balderdash players?

The problem with a disease like Alzheimer’s is caregivers are often too tied down taking care of their loved ones to participate in fundraisers. A caregiver can be worn slick from having to make a lot of hard decisions. Those that have been through the gamut of caring for and losing a loved one to Alzheimer’s often want to put the past behind them. I can’t blame them for trying to get their lives back on an even keel.

Alzheimer’s is not a glamorous disease, and often one that people try to hide from the world. The person with dementia does not want to be treated like a child, and families may be embarrassed by their loved one’s behavior.

Too often caregivers don’t realize how much they can benefit from Alzheimer’s Association employees and volunteers. A speaker at one of our support group meetings helped me deal with Jim’s quirkiness. The speaker said to gauge behavior by asking yourself, “So what?” If the problem isn’t endangering anyone, “So what?”

His practical advice helped me through some sticky situations. One day Jim’s mom called to tell me he was out in the yard naked and wouldn’t come inside. She couldn’t get him to put his clothes back on. She was so distressed.

“I’ll be right home,” I assured her. “He probably had a reason for taking his clothes off. He’s either too hot, or he’s had an accident.”

“But he’s out in the yard without any clothes on.”

“Don’t worry about it,” I said. We lived in the country on a gravel road without much traffic. “So what if someone comes by? If they don’t want to see a naked man, they can keep their eyes on the road. After all, he’s is our yard.”

Recently, I saw a letter on a health Website written by a woman whose husband had Alzheimer’s. She was so embarrassed by her husband’s behavior that she didn’t want to take him out in public. She felt like people were staring at them. My comment was, “Jim didn’t notice people staring, and I got to the point where I didn’t care.”

We continued to go places that Jim enjoyed and didn’t worry about what others might think. I always considered Penny Braun, former executive director of the Mid-Missouri Chapter, to be my mentor about Alzheimer’s. Penny always said, “Ice cream solves a lot of problems.”
Following the advice of a wise lady, I took Jim to Dairy Queen almost daily.

A few days ago, I was looking for a specific picture of Jim. Digging through the boxes of pictures I don’t have in albums yet, I came across pictures of Jim in all stages of the disease. It tugged at my heart to see him in the early stages when he wore his cowboy hat, boots, and 501 Levis. He and his brother sat on the patio playing guitars together. I remember that day—Jim was having trouble finding the right chords to play. Jim, the master guitarist missing a simple chord change and forgetting the lyrics to songs he had sung for years.

Yes, those days are behind me now, but I believe those of us who have finished our journeys should help those who are still traveling. I hope we “cream” Alzheimer’s in my lifetime. All I know is that we can’t give up on finding a cure.

If some of us don’t step out of our comfort zone and put effort into bringing Alzheimer’s to the forefront, millions of Americans will always struggle with the daily challenges of caregiving and the heartache of a cruel and debilitating disease. We need to put the research spotlight on the challenge to end Alzheimer’s.

“Let’s Cream Alzheimer’s” is a good way to join a mission statement and a fun event. So if you are in Sedalia on June 19, join us 7 PM at the Celebration Center while we “cream” Alzheimer’s. It’s a time to relax and enjoy. The hardest decision you will need to make is “two scoops, or one?”

Copyright (c) June 2010 L. S. Fisher
http://earlyonset.blogspot.com/
http://boomerobics.blogspot.com/

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Voices of people with early stage Alzheimer's

I was struck by a blog entry from Natasha recently. She said something like this: "There is very little advice, information or understanding, related to the emotional needs of the person who is in the early stages of Alzheimer's."

I'd like to believe I have some small insight into the emotional needs of people with Alzheimer's, but I'm certain I can't fully understand. Only people with dementia can speak to their emotional needs. But I can share the voices of a few individuals I've met (or read) through the years who courageously share their journey.

Mike Donohue is one such gentleman who openly speaks about his experience. Mike writes (in "Taking Action"): "Nearly three years ago I was diagnosed with Alzheimer's disease. I was shocked and very upset. Why me? This can't be true! After giving it some time to set in, I told myself: OK, I have it. I am not going to change it, so what am I going to do about it? ... What works for me is (choosing) my attitude ... and I find I can by remaining in contact with folks, finding new friendships among those with the same disease and getting active about sharing my experience with living with this disease."

Lisa Snyder, MSW, LCSW, director, Quality of Life Programs at the University of California-San Diego, writes a newsletter called "Perspectives." This publication is one of a growing number of resources that attempts to address the needs and experiences of persons living with dementia.

In a recent newsletter, Phil shared his thoughts on living with Alzheimer's: "I do not live beyond today; I do not live in yesterday, or expect anything from tomorrow except what it brings, and I will deal with it then."

At an Alzheimer's Association Early Stage Town Hall meeting several years ago, individuals with early stage dementia gathered to candidly share their views, experiences and feelings about living with the disease. Here is a small sample of what they wanted others to know:

"Give us an opportunity to grieve ... and the right to be angry."

"I encountered family and friends who were reluctant at first to accept my diagnosis, and it meant dealing with their denial. It would be helpful for them to accept it rather than pretend it doesn't exist."

"I am scared. I don't know how long I will be able to work, care for myself, stay at home, and the like. My husband and sons tell me not to worry; they will take care of me — but what a burden will I be?"

"I am Sylvia. I was Sylvia before I was diagnosed, and I am still Sylvia after being diagnosed. I'm still the same person — treat me the same way. Talk to me the same way. Include me in the conversation as you would before."

Here are 2 comments from persons with Alzheimer's, from the booklet "What Happens Next?"

"This disease is a major attack on your confidence."

"I'm still me, with kinks."

If you have Alzheimer's or a related dementia, I welcome your words, thoughts, and feelings.

Please use these additional resources.

Taking Action: A personal and Practical Guide for Persons with Mild cognitive Impairment and Early Alzheimer's disease
(To order call the Alzheimer's Association Helpline at (800) 272-3900 or go to their website at http://www.alz.org/mnnd/?or to http://www.alz.org/mnnd/documents/2010_Taking_Action_e-book.pdf for a PDF.)

Perspectives
(Quarterly newsletter that addresses the concerns, reflections, and coping skills of individuals with Alzheimer's or a related memory disorder. Published by the University of California-San Diego Shiley-Marcos Alzheimer's Disease Research Center. Free by e-mail subscription or $20 for hard copy. Contact Lisa Snyder, LCSW at lsnyder@ucsd.edu or 858-622-5800 to subscribe.)

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10 warning signs of Alzheimer's

With November upon us, the holiday season is apparent. This time of year I experience an increase in calls and e-mails from concerned family members. Since the holidays are often a time when families who are miles apart gather with one another, memory problems get noticed. A son or daughter visiting mom or dad for a few days may begin to see changes in memory that may not have been so apparent during their phone call visits.

Sometimes it can be difficult to differentiate between the normal changes that occur with aging and the signs of something more serious like Alzheimer's disease. The Alzheimer's Association has an updated list of 10 warning signs of Alzheimer's that I find helpful. Each warning sign includes a description with some examples. In addition, there is a brief statement of normal or typical age related changes that may not be a cause to worry.

Alzheimer's Association 10 warning signs of Alzheimer's:

Memory loss that disrupts daily life
One of the most common signs of Alzheimer's is memory loss, especially forgetting recently learned information. Others include forgetting important dates or events; asking for the same information over and over; relying on memory aides (e.g., reminder notes or electronic devices) or family members for things they used to handle on their own.
What's typical? Sometimes forgetting names or appointments, but remembering them later.Challenges in planning or solving problems
Some people may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before.
What's typical? Making occasional errors when balancing a checkbook.Difficulty completing familiar tasks at home, at work or at leisure
People with Alzheimer's often find it hard to complete daily tasks. Sometimes, people may have trouble driving to a familiar location, managing a budget at work or remembering the rules of a favorite game.
What's typical? Occasionally needing help to use the settings on a microwave or to record a television show. Confusion with time or place
People with Alzheimer's can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there.
What's typical? Getting confused about the day of the week but figuring it out later.Trouble understanding visual images and spatial relationships
For some people, having vision problems is a sign of Alzheimer's. They may have difficulty reading, judging distance and determining color or contrast. In terms of perception, they may pass a mirror and think someone else is in the room. They may not realize they are the person in the mirror.
What's typical? Vision changes related to cataractsNew problems with words in speaking or writing
People with Alzheimer's may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue or they may repeat themselves. They may struggle with vocabulary, have problems finding the right word or call things by the wrong name (e.g., calling a "watch" a "hand-clock").
What's typical? Sometimes having trouble finding the right wordMisplacing things and losing the ability to retrace steps
A person with Alzheimer's disease may put things in unusual places. They may lose things and be unable to go back over their steps to find them again. Sometimes, they may accuse others of stealing. This may occur more frequently over time.
What's typical? Misplacing things from time to time, such as a pair of glasses or the remote controlDecreased or poor judgment
People with Alzheimer's may experience changes in judgment or decision-making. For example, they may use poor judgment when dealing with money, giving large amounts to telemarketers. They may pay less attention to grooming or keeping themselves clean.
What's typical? Making a bad decision once in a while.Withdrawal from work or social activities
A person with Alzheimer's may start to remove themselves from hobbies, social activities, work projects or sports. They may have trouble keeping up with a favorite sports team or remembering how to complete a favorite hobby. They may also avoid being social because of the changes they have experienced.
What's typical? Sometimes feeling weary of work, family and social obligationsChanges in mood and personality
The mood and personalities of people with Alzheimer's can change. They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or in places where they are out of their comfort zone.
What's typical? Developing very specific ways of doing things and becoming irritable when a routine is disruptedblog index

1998-2010 Mayo Foundation for Medical Education and Research. All rights reserved.

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A call for change in Alzheimer's diagnosis, services

I received this piece from a reader of the blog a couple of weeks ago. The author, Allan, asked if I might share it with you. It's well written and thought provoking, so I'm passing it along to you. I shortened it, and will respond next week.

"As we baby boomers start to deal more with Alzheimer's disease, doctors must be more willing to listen to anecdotal comments by well informed spouses/caregivers ... and doctors along with local/national associations must start providing more services for those with early onset Alzheimer's and those in early stages of Alzheimer's.

My wife has Alzheimer's. Only 63 when diagnosed six months ago, she's technically classified as having early-onset Alzheimer's ... a tag given to those who are diagnosed before the age of 65. There are many day-care activity programs available to those with moderate to severe stages of Alzheimer's, and that's a good thing. However, there's virtually no support available to those with early-onset Alzheimer's or in the earliest stages of Alzheimer's.

As is true for many eventually diagnosed with Alzheimer's, my wife began exhibiting symptoms several years before the official diagnosis was made. I told doctors about her worsening symptoms at each visit, but my comments were routinely ignored. I noted how she kept asking me the same question over and over without any recollection of having just asked me that same question minutes earlier. I mentioned her getting lost while driving in our community, her disorientation, her aphasia ... but these comments weren't seen as red flags by anyone but me.

Her behavior during doctor visits didn't seem to indicate any problems — her initial cognitive testing results were good, MRIs and blood work didn't show any problems, and the neurologist suggested that the symptoms I described were probably due to anxiety or stress. When cognitive testing results worsened later on, the diagnosis became severe cognitive impairment due to depression. For many months, the recommended treatment brought no improvement ... only a worsening of Alzheimer's symptoms ... and we eventually went for a second opinion at a hospital-affiliated Alzheimer's Disease Research Center. There the diagnosis was probable Alzheimer's ... not depression.

Some of the early signs of Alzheimer's are identical to signs of depression or stress. It seems that neurologists and cognitive psychologists too often base their diagnosis and treatment recommendations solely on objective testing results after relatively brief visits with patients. This needs to change! Doctors need to give more attention to the anecdotal observations supplied by spouses/caregivers.

National organizations such as The Alzheimer's Association must also change how they provide services. They do a great job of providing support groups for spouses/caregivers, as well as day care opportunities for those with more advanced Alzheimer's, but they often provide no groups for people with early-onset Alzheimer's or in the early stages Alzheimer's.

Alzheimer's takes a terrible toll on those suffering from the disease and on their spouses/caregivers. A good first step would be to begin forming groups around the country designed to meet the needs of those who are diagnosed at a young age, and for those who are in early stages of the disease!"

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A gift you can give to those with Alzheimer's

During the last conversation I had with my grandmother, I asked her how old she was. She replied, "Sixteen".

Accepting that my grandmother had Alzheimer's disease also meant that I accepted the symptoms that accompanied her disease. Her dementia placed her reality back to a time when she was a young woman. I asked her what she liked about being 16 and she replied, "Well, it's wonderful, I am going to my senior dance!"

Our conversation continued with excitement about the dress and shoes she had picked out, her date, and the music she expected they would dance to. I was fully present with my grandmother, living her reality in that moment.

Maybe the effortless capacity for persons with Alzheimer's to live with sheer contentment in the moment and in their reality is a silver lining within the disease. Maybe our capacity to provide unconditional reassurance by living and accepting their truth is the gift we give in return.

 View the original article here

Change the Trajectory of Alzheimer’s

For the past ten years, I’ve joined with other Alzheimer’s advocates to proclaim loud and clear that Alzheimer’s disease will have a detrimental impact on this country’s financial future. We who advocate for Alzheimer’s research and programs sometimes feel neglected. Mega resources are spent on diseases that are better known or understood, or sometimes trendy in the sense that it catches the attention of the media or a popular celebrity.

The first hurtle for Alzheimer’s advocates is to educate legislators, and the American public, that Alzheimer’s isn’t a joke about people getting older and more forgetful. We point out, politely of course, that Alzheimer’s isn’t getting much of the National Institute of Health’s research pie and still far short of the $1 billion goal we had the first year I attended the Public Policy Forum.

The Alzheimer’s Association has just released a report “Changing the Trajectory of Alzheimer’s Disease: A National Imperative.” Research dollars for Alzheimer’s is pushed to the bottom of the list—after all, it affects only elderly people, doesn’t it? It’s just a little forgetfulness, isn’t it? There is medication that slows or stops the progression, don’t you know? The answers to those questions are wrong, wrong, and wrong again.

Alzheimer’s is an incurable brain disorder that brings about brain cell death. It is an economic and emotional hardship on the family when their loved one is diagnosed with dementia. Harry Johns, President and CEO of the Alzheimer’s Association, said, “Today, there are no treatments that can prevent, delay, slow or stop the progression of Alzheimer’s.”

As advocates, we tell our personal stories and rely on staggering statistics to persuade legislators to allocate more funds to eradicate this devastating disease. Alzheimer’s has forever changed the lives, and dreams of more than five million Americans.

An investment in research now can drastically change the trajectory of Alzheimer’s. Without effective treatment or a cure we can expect the number of people 65 or older with Alzheimer’s to increase from 5.1 million today to 13.5 million by the middle of the century. This is the human tragedy of the disease. Financially, by the time Medicare, Medicaid, medical expenses, and providing care are factored in—Alzheimer’s disease will cost the United States $20 trillion (with a T) over the next forty years.

Of course, the ultimate goal is to find a vaccine to prevent Alzheimer’s or treatment that will cure the disease. Even a five-year delay would reduce the 2050 numbers to 7.7 million instead of the 13.5 million projected to develop the disease.

When Jim developed an Alzheimer’s type of dementia, I learned what an un-funny joke it is. I received the wakeup call informing me that dementia doesn’t just affect the elderly. Jim was only forty-nine when the relentless process began. After ten years, the disease won—just like it has 100% of the time. The only survivors at Memory Walk are the family members who learned that through perseverance, faith, and unconditional love, they can endure the decade or decades leading to the journey’s end.

Has the time come that we need to end our polite request for Alzheimer’s research dollars? Has the time come for us to demonstrate the same perseverance for research that we showed to survive caregiving, or living with a disease without a cure?

A first step is to push for the National Alzheimer’s Project Act. This legislation would develop a national plan through a National Alzheimer’s Project Office. With the combined efforts of stakeholders in the disease—caregivers, people with the disease, providers—and federal government agencies, a comprehensive plan could be devised to address all the issues caused by Alzheimer’s. Not only do we need research so that someday we have survivors, we also need programs for those living with the disease.

Age does not cause Alzheimer’s, but it is the No. 1 risk factor. Without a united effort to find the elusive cure for this disease, those of us who live to be eighty years old will have a fifty percent chance of developing Alzheimer’s. I don’t think it is selfish of me to admit I don’t want to spend the last years of my life with a brain disorder that will rob me of my memories. The time has come to kick our advocacy up a notch to change the trajectory of Alzheimer’s.

copyright (c) May 2010 L. S. Fisher
http://earlyonset.blogspot.com
http://boomerobics.blogspot.com

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Couples and Alzheimer's Speak

This is a lovely video, well worth the three minutes to watch.

Thanks for stopping by,

Esther

Suggested reading
Learning to Speak Alzheimer's by Joanne Koenig Coste
The Forgetting by David Shenk

On the web
How to Live With a Spouse who has Alzheimer's

View the original article here

Early diagnosis of Alzheimer's empowers people

Thanks to all of you for your candid comments about the importance of early diagnosis and the need for more supportive services after a diagnosis.

I just completed delivering another session of a program called HABIT (Healthy Action to Benefit Independence and Thinking). Persons in this program have a diagnosis of mild cognitive impairment or early stage Alzheimer's disease. Many of these participants talked about the challenge of having their memory concerns validated and receiving a clear diagnosis. Fortunately, these folks were able to get a diagnosis early and are pro-actively taking steps to compensate for their impairment and possibly slow down decline.

I feel strongly that persons are empowered when they receive an early diagnosis. They begin to understand that the changes and challenges are likely part of a disease process — not a lack of effort, motivation, or sign of weakness. An early diagnosis offers the patient and their family time to arm themselves with knowledge and take full advantage of existing strengths. And early diagnosis allows for psychiatric symptoms such as depression to be identified and treated. I don't want to imply that an early diagnosis provides individuals and families with rose colored glasses (nobody wishes for the diagnosis and the journey will not be easy), but instead it does help them with an understanding and a plan for whatever the future will bring.

If you're concerned about memory changes in yourself or a loved one, the Alzheimer's Association has a document that can be helpful to complete and take to your doctor. You can find the checklist on the Resources tab above, and a link to the Mayo Clinic memory training program.

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Mild cognitive impairment: A way station along road to Alzheimer's

(Ronald Petersen, M.D., Ph.D., is the director of the Mayo Clinic Alzheimer's Disease Research Center. Below is an excerpt from an article he wrote that I thought you may find interesting.)

An unprecedented global shift toward an aging population has brought with it an increase in the occurrence of cognitive impairment such as Alzheimer's disease. With the baby boom generation beginning to arrive at the age of risk, this issue may be approaching crisis proportions that may bankrupt the health care system as we know it.

In the field of age-related dementia, there's likely a continuum from normal aging through a stage often called mild cognitive impairment on to dementia. The challenge for clinicians lies in assessing the question: "How much forgetfulness is too much?" Some incidental episodes of forgetfulness — "Where are my car keys?" — are likely common expressions of normal aging. However, when individuals begin to forget important information such as doctors' appointments and, most importantly, when they do this on a repeated basis, and when a person's friends and family begin to notice forgetfulness in the individual, it's time to seek medical attention.

A great deal of research in aging and dementia is now focused on mild cognitive impairment — a clinical condition in which people are more forgetful than they used to be, and more than they ought to be. And although their function around the community may be relatively normal, when these individuals seek a medical evaluation the degree of forgetfulness exceeds what would be expected for that person's age and education.

At Mayo Clinic in Minnesota, investigators are pursuing these issues in the Mayo Clinic Study of Aging. This project is a study over time of 2,000-3000 persons randomly sampled between the ages of 70- to 89-years old. At each annual visit, information is acquired, including mild cognitive impairment scans, blood samples for DNA and plasma proteins, historical data on cognitive and intellectual activities, dietary information, a quantitative assessment of gait, and a measure of olfactory functioning, which can be associated with degree of dementia in Alzheimer's.

The long-term goal of this project is to describe trajectories of successful aging, typical aging, and impaired aging from a cognitive perspective. Ultimately, we hope to identify a model that might be useful at predicting who is going to follow which of the three aging trajectories. When disease-modifying therapies become available, this model could help clinicians decide when and how to intervene with individual patients. It may well be that studies performed in Minnesota will inform the worldwide community about this pending crisis.

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Perceptions – Alzheimer’s patient vs. Caregiver – Video Clip

September 25, 2010 by Alzheimer's Speaks

Lori La Bey of Alzheimer's Speaks and Senior Lifestyle Trends

???Perceptions – Alzheimer’s patient vs. Caregiver???

This is a personal story about my Mother and her perception of a situation?verse my families perception of the situation.? Once again my Mother and her disease taught?us all?a great lesson? that I wanted to share with all Caregivers.???

Here is the link to our youtube?channel at Alzheimer’s Speaks where you can?watch?the story?

“Spa Day at the VOA”???

http://www.youtube.com/watch?v=ae3GSZpMkZ0

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States Plan for Alzheimer’s

Alzheimer’s Advocates throughout the United States have worked with their home states to develop a plan to prepare for the silver tsunami made up of aging baby boomers. So far twelve states have completed their plans. Another eighteen states, including Missouri, are developing plans.

In addition to the expected elected officials and aging professionals, the nineteen member Missouri Task Force includs a person with memory loss and a caregiver. Community Forums were held throughout the state to address the challenges of families facing Alzheimer’s disease.

The 110,000 Missourians with Alzheimer’s disease are cared for by 180,000 unpaid caregivers who provide 156 million hours of unpaid care. Most caregivers want to care for their loved one at home as long as possible. With the necessary support and services in place, this army of dedicated unpaid caregivers can save the state $1.7 billion.

The Missouri Community Forums helped the Task Force pinpoint the areas that needed attention. The concerns family members voiced at the Alzheimer’s Association Mid-Missouri Chapter’s forum were:

1. Access to early and accurate diagnosis by doctors and health care professionals.
2. Availability of affordable home health and respite care to keep loved ones at home longer.
3. Investment from the state of Missouri for Alzheimer’s research.

This short list of goals is reasonable, and any caregiver can attest to their validity. Early diagnosis is important. If dementia-like symptoms are caused by a treatable condition, it is important to take proper measures to address the underlying problem. If the diagnosis is Alzheimer’s, a proper treatment regimen can be started when it does the most good. Early diagnosis helps the family plan for the future.

Affordable home health and respite are basic needs when a loved one is cared for in the home. One person cannot be awake and alert twenty-four hours a day, seven days a week. Providing care for a person with Alzheimer’s is a huge undertaking! Not only do states need a plan, individuals need one to prevent burnout and illness. A care plan designed to provide relief for the primary caregiver with home health support and occasional respite care will keep people in the comfort of their own homes longer.

The state of Missouri annually spends $100 million in Medicaid for dementia long term care. By investing in Alzheimer’s Service Grants to support families caring for their loved ones at home, the state could save millions in Medicaid dollars.

The Missouri Alzheimer’s State Plan will be delivered to the governor in November as part of Alzheimer’s Awareness Month. It is a fiscal responsibility of our elected officials to tap into this valuable resource of dedicated caregivers.

Copyright ? July 2010, L. S. Fisher
http://earlyonset.blogspot.com

To see which states have plans:
http://www.alz.org/national/documents/StatePlanMap.pdf

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You can make a difference in Alzheimer's diagnosis, services

Allan's recent guest posting — "A call for change in Alzheimer's diagnosis, services" — is generating a great deal of dialogue and it's clear that many of you share similar feelings and experiences.

Thank you, Allan, for your well crafted article that so many can relate to. As many of you note, we have an inadequate system of diagnosing, treating and supporting persons with Alzheimer's, and their families.

With the looming epidemic of Alzheimer's, drastic changes are needed and new approaches to early diagnosis and support must be implemented. There are, and will be, challenges. To all of you, thanks for the constructive conversation. Keep it going.

My colleague, Michelle Barclay, vice president of programs for the Minnesota-North Dakota Alzheimer's Association, offered the following response:

"There is tragically little funding for these interventions (support groups for early stage), and they are costly to administer. It's my belief that people need special training to lead such a group if the results are to be meaningful or therapeutic ... The Alzheimer's Association has in its strategic plan to develop more early stage support groups across the country ... over the next few years, more and more places will be creating early support groups.

"Like adult day, which was created over many years, it will take time. Adult day really did not take off in California until there was a reimbursement source. We need to figure out a way to get non-pharmacological interventions reimbursed or at least partially reimbursed for families."

A doctor I know and respect said recently, "If we accept that Alzheimer's presents only a terrible toll, providers naturally will avoid the diagnosis. If, however, we believe that it is only unrecognized and untreated Alzheimer's that causes the terrible toll, there is a reason to diagnose.

"(Without early diagnosis) you miss the opportunity to 'see' things while you still can. And you also miss the chance to design a future that accommodates your blindness. The difference is that with most other progressive diseases, you know what the problem is, where it is headed, and what you can do to maximize the time you have and minimize the adverse consequences ahead."

My view?

We need to believe that short of a cure, the benefits of early identification and intervention are substantial to those with the disease and their families, as well as to communities as a whole.We must look for ways to provide immediate access to affordable insurance options for people with younger onset dementia to ensure that they receive early diagnosis and ongoing treatment and support.We need to ensure the availability of interventions aimed at improving disease knowledge and management, promoting overall physical and mental health, delaying progression of disease symptoms, and enhancing quality of life.And we must implement a systemic education strategy for physicians/medical providers that increases awareness and reinforces the benefits and incentives for early identification.

The unfortunate part in all of this is that it will take time, yet it's important for folks like you to know that you're being heard and the problem is being recognized. For now, I support and encourage people to be assertive in getting a diagnosis and advocating for programs and funding that can change the way we think about a diagnosis of Alzheimer's.

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Wandering and Alzheimer’s: You Never Know When It Will Happen

Wandering and Alzheimer’s: You Never Know When It Will Happen (Minding Our Elders®)Minding Our Elders®Breaking the Isolation: Information and Support for Caregivers and Seniors by Author, Columnist, Consultant and Speaker Carol Bradley BursackHomeArchivesSubscribeInterested In Sponsorship? Email CarolBulk Book Orders for "Minding Our Elders: Caregivers Share Their Personal Stories?" Email Carol MEDIA GUIDE CLICK HERE
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Monday, September 27, 2010Wandering and Alzheimer’s: You Never Know When It Will Happen

Dear Carol: My mother has Alzheimer’s disease. She lives with us in our home, but there isn’t someone available during the day. So far she is doing okay, but I’m worried about the fact that she wants to go outside, and then she just takes off muttering things I don’t understand. I know wandering is a part of Alzheimer’s. What can we do??? Francie

Dear Francie: You are right that wandering is a common factor with Alzheimer’s. It’s one of the most frightening changes for caregivers, especially since people with Alzheimer’s, mostly elders, can be physically frail. They are most certainly vulnerable.

Read more about wandering and Alzheimer's:

Find care agencies to help you care for your loved one:

Read real caregiver's stories:

Posted on Monday, September 27, 2010 at 01:01 AM in Aging, Alzheimer's, caregiving, Tips for Caregivers, Tips for Seniors | Permalink

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