On several occasions I thought how much my mother would have loved to see me in it. Before I met my husband, my mother was my biggest fan.

When I say my mother would have loved to see the show, I mean the mother who raised me and was always there for me in my young adult life — the mother I knew up until 2008.

That mother saw me every night when I had the lead in my high school production of “Mame.” The box office people knew her by name and on nights when tickets sold out, they let her stand in the back and watch.

Mom always said, “Tania, you have such presence on stage.”

Whether I was performing on Broadway or a storefront theater, my mother was in attendance and always sang my praises.

I am describing my mother before Alzheimer’s.

In 2008 she started slipping away, calling me less and less, repeating herself more and more, forgetting birthdays and asking strange questions like, “What day is Thanksgiving, Tania?” From then on, a different mother emerged.

She was still loving but unable to be there for me because her memory was fading. For instance, she couldn’t remember that I was pregnant with my second child and wasn’t at the delivery like she was with my oldest. She had no idea what was happening in the world. She never asked about my children or husband.  She didn’t know where I lived. She had no idea I was a professional actress.

Mom was a doctor who never left the house without looking her best. She always wore dresses.  She went to the hairdresser every week for a wash and set. She was private to a fault.

In the nursing home she wore pants, let the caregivers braid her hair in cornrows, and shared a room with two other patients.

I suspect that she’d be mortified by the woman she had become, and I had to make peace with that. I didn’t love her any less when she lived in the nursing home. She was her purest self. The essence of my mother — sweet, good, funny, kind and loving — remained.

Photo by Liz Lauren: “A Christmas Carol”

It stings that she didn’t see me play Mrs. Cratchit; and it pains me that—even if she was still alive—she couldn’t have attended.  She wouldn’t have been comfortable leaving the nursing home, getting in a car or sitting in a dark theatre surrounded by people. I don’t think she would have even understood it was me on the stage.

Alzheimer’s splits a person in two; their life divides into who they were before and who they are afterwards.

I grieve my Mom twice, mourning two spirits but lucky for having known both.

About the Blog Author:
In addition to being a wife, mother, writer, actress and teacher, Tania Richard was a caregiver for her mother, who was diagnosed with dementia in 2011 and passed away the following year. In the short time Tania was her mother’s caregiver, she learned a great deal about the challenges caregivers face.

Learn More:

Grief & Loss as Alzheimer’s Progresses
Caregiver Center
Support Groups
Online Community

Why?  As a way of turning our passion for running into a fundraiser for The Longest Day – a sunrise-to-sunset event to raise funds and awareness for Alzheimer’s care, support and research.

The two of us — best friends from Wisconsin — each experienced the pain of watching Alzheimer’s disease take away one of our grandparents, so this was not only a chance to challenge ourselves through our running but also to honor their memories.

Organizing our event seemed really crazy and far-fetched at first, especially since neither of us had ever tackled anything like it before.

We worried about the timing.

We worried about raising the suggested goal of $100 for each hour that we would be running, $1600 in total.

We also worried about how the day itself would go. Would we be running in circles alone all day, exhausted, feeling like what we were doing didn’t matter?

Sunrise

In the dark hours of the morning of June 20, we headed out alone to the track, not knowing if we could run the distance and not knowing if anyone outside of a few friends would show up to support us. We felt a huge pressure to complete the entire 16 hours of the event to honor people with Alzheimer’s disease and those that care for them all day long, every single day.

We had asked people who pledged to tell us if they were donating in support or memory of someone with Alzheimer’s and almost every single person had a personal connection. We took the names of moms and dads, grandmas and grandpas, husbands and wives and wrote each on a piece of paper that we pinned to our shirt. Every few laps around the track, we switched to a different name, and ran each section in remembrance of those lost.

Mother Nature threw us a curveball in normally temperate Wisconsin that day. It was more than 95 degrees, humid, the sun was beating down and a strong wind greeted us each time we rounded the track. It was not an ideal day to run from sunrise to sunset, but we knew the struggle would be nothing compared to the Alzheimer’s battle. What we didn’t know was that so many people would brave the sweltering conditions to support us and our cause.

Sunset

As we set out on the final hours of the day, with heavy legs and blister-covered feet, people started to pull into the tiny parking lot of the track, and one by one, they filtered out to join us.

Some ran beside us, some ran just behind us, but we all ran together.

As the laps ticked by, we weren’t tired; our legs didn’t hurt. We felt like we were being carried by an army of warriors. We have never felt such a profound sense of community – of solidarity. We weren’t running fast, but we were running.

Running the distance

Our fear of running in circles alone all day was unfounded – between the dozens of runners and walkers that showed up, we had at least one person stride-for-stride with us the whole 16 hours!

We also successfully met our fundraising goal. Friends, family, coworkers and even complete strangers showed generosity beyond what we had envisioned.

Looking back now, so much of the day is a joyful blur, yet so much sticks out in our minds. Watching the countdown clock tick away; grabbing a bottle of Gatorade every few laps to stay hydrated; propping up bare feet after each hour on the track; eating a whole jar of pickles — which was the only thing that tasted good after running for six hours; and reading all of the encouraging texts from friends and family who couldn’t be there.

It was such a special day. We really were part of something amazing at that moment in time.

This June 21, we plan to run all 16 hours again, switching off every hour, but we want to challenge ourselves to run even more miles than the 76 miles we traveled on The Longest Day last year.

In challenging ourselves to push further, we hope that we can inspire others to donate, become advocates and join us in working toward a day when no one has to face Alzheimer’s. We are in it until Alzheimer’s is finished.

About the blog authors: Kim Maas and Rachel Degrand are best friends living in Wisconsin. Last year, they ran more than 76 miles as team Running to Remember in the Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event to honor those living with Alzheimer’s disease and their caregivers. This year, on June 21, 2013, they are running even further as part of their commitment to end Alzheimer’s.

This trip was very different.  I was one of several hundred people whose lives have been changed by Alzheimer’s disease (or related disorders).  We were there to speak out for ourselves, our caregivers, our loved ones and our friends at the 25^th Alzheimer’s Association Advocacy Forum.

My wife and I arrived in Washington, D.C. on Saturday afternoon to get ready for the Alzheimer’s Association National Early-Stage Advisory Group (ESAG) business meeting and dinner on Sunday.  This was one of the few times that I have met my colleagues on the ESAG face-to-face.  Normally, we participate in a monthly conference call.  Of course, meeting in person is much more informal and comfortable than talking over the telephone.

On Monday, the National Early-Stage Advisory Group hosted a welcome reception for advocates living with Alzheimer’s and other dementias.  This was my first chance to meet people from all over the nation who were touched by the disease and wanted to do something about it.  During the educational session, it was my privilege to introduce Dean Hartley, Ph.D., who is the Director of Science Initiatives for the Alzheimer’s Association.  I was delighted to do so because it gave me an opportunity to make a pitch to a captive audience for participation in clinical trials.  I hope I convinced at least a few people living within driving distance of a research institution to volunteer for a clinical trial.  It’s safe, and you might get in on the ground floor of a medical breakthrough.  I might have been extremely lucky.  I was one of the early-stage patients who may have benefited from the Solanezumab trial.  Dr. Hartley presented a research update which included the process of drug development, the importance of clinical trials, the value of Alzheimer’s Association TrialMatch, and the impact of specific trials including the Dominantly Inherited Alzheimer’s Network (DIAN).

I also met Dennis Moore, a former member of the House of Representatives from Kansas, who has Alzheimer’s and his wife.  Later in the day, at the opening session, a film sponsored by the Massachusetts/New Hampshire Alzheimer’s Association Chapter called “What’s One Thing You Never Want to Forget” was shown.  I had already seen it, but it gets to me every time.

The Tuesday morning keynote address was by Francis Collins, M.D., Ph.D., of the National Institutes for Health.  Dr. Collins presented some good news.  He announced the allocation of an additional $40 million dollars for basic research on Alzheimer’s disease.  This sounds like a great deal of money.  It is, but medical research is very expensive.  It will only support a handful of additional investigations.  I think that we must not let up on arguing for additional funding for research and development.

That was an excellent justification for the remainder of the day’s activities: an introduction to the art of lobbying. The basic strategy for all is to present a consistent, coherent message and be prepared for frequently asked questions.  Tell your own personal story in order to show how Alzheimer’s disease affects many families and how it affects each one differently.

Wednesday was the day we went into action.  I talked about my extended family and how Alzheimer’s disease has affected family members across the state from the New York line to the Boston suburbs.  That was how I got to visit four congressional offices and met with one elected official (Congressman Joe Kennedy) and administrative assistants for Senator Elizabeth Warren, Congressman Ed Markey and Congressman Richard Neal.  In general, our reception was good.  Kennedy’s family has been touched by Alzheimer’s disease and so has Markey’s family.

I was pleased to find a great deal of sympathy from all the congressional offices and none of the altered behavior (like slow speech with simple words) that one sometimes gets from people who have never before been exposed to someone that had Alzheimer’s disease.  I hope that the efforts of all of us who participated in this trip will have a positive result.  This trip was a very positive experience for me and my wife.  I would encourage everyone living with Alzheimer’s disease to get involved because only those of us who have seen the disease close up can be the face of Alzheimer’s.

About the blog author: Allen Krieger is a member of the Alzheimer’s Association Early-Stage Advisory Group. He attended the 25th annual Alzheimer’s Association Advocacy Forum with more than 900 advocates to pay tribute to all those affected by Alzheimer’s and to help make real policy change.

LEARN MORE:

• Become an Alzheimer’s Advocate
• Urge Congress to Support the HOPE for Alzheimer’s Act
• Alzheimer’s Association Advocacy Forum

I lost my mother to Alzheimer’s disease. And then, my father.

I tell their story, because they can’t.  I tell their story in hopes that future generations will not have the same story to tell.

Today, I am surrounded by fellow advocates at the 25^th annual Alzheimer’s Association Advocacy Forum – my thirteenth. We are the voice of many, with one message:  The time to act is now! Alzheimer’s is a health crisis that will only become greater.

I hear our collective voice, and I am struck by how strong it has become.  At my first Forum in 2001, I remember David Hyde-Pierce introducing Maureen Reagan through speakerphone because her own illness precluded her attendance in-person.  I can still hear her stirring call-to-action, and our resolve to take up that challenge.

Since then, we’ve had real victories – from the establishment of Medicare Part D, to the elimination of the Social Security Disability Insurance waiting-period for early-onset Alzheimer’s, to the landmark passage of the National Alzheimer’s Project Act (NAPA) in December 2010. My dad passed from Alzheimer’s-related complications earlier that same year, making NAPA an especially precious gift to his memory.

We have momentum, but there is still a long way to go.  Today, one in three seniors dies with Alzheimer’s or another dementia, and more than 5 million Americans are living with the disease.  These are numbers that must be changed.

It’s incredibly hard when the disease claims one of our advocates or their loved ones. But we keep at it because this is a battle we must win. We come back, year after year – and will continue to for as long as it takes. We come back, because we must—for a better tomorrow and a world without Alzheimer’s.

It’s very powerful to hear the stories of people from all walks of life of how they are affected by Alzheimer’s. We inspire each other, especially during the challenging times. The Advocacy Forum provides us an energy and hope.

Thirteen suddenly feels like a lucky number…

About the author: Bob Marino is an Alzheimer’s Ambassador working to make Alzheimer’s a state and federal priority.  He serves as co-chair of the Pennsylvania Public Policy Coalition for the Alzheimer’s Association, sits on the boards of the Delaware Valley Chapter and the Alzheimer’s Impact Movement, and was the 2006 recipient of the Association’s Maureen Reagan Outstanding Advocate Award. 

LEARN MORE:

• Become an Alzheimer’s Advocate
• Urge Congress to Support the HOPE for Alzheimer’s Act
• Alzheimer’s Association Advocacy Forum

I can hear a whistle in the distance, but everybody else is chatting about the weather or shrugging their shoulders. They are saying things like, “It sure would be terrible to get stuck on this track when the train comes,” or worse, “I don’t hear anything.” The train continues to get closer—but no one moves. That’s how I feel about Alzheimer’s disease—because it’s coming and if we don’t do something to divert it, it’s going to cause a whole lot more damage and heartache than we can even imagine.

That’s why my husband Mike and I are advocates.  We have been on those railroad tracks. Alzheimer’s has touched our lives—probably like it’s touched yours.  And we are hoping, by working together, that we can make a difference.  We are hoping we can divert that train.

My dad died from Alzheimer’s disease in December 2011, but long before that, my family felt and paid the price of this disease.  Not just in money (although that’s a big part of it), but in time and worry—and even outright panic: How can my elderly mom help a man who is twice her size? How many times can my dad fall without breaking a bone?  Is he going to escape from the facility again?  And while all of that is going on, you’re also going through the process of grieving for the vibrant, funny, intelligent patriarch that you’d relied on for support and advice all your life.

I was born and raised in California and only moved to Idaho just before my dad was diagnosed.  The only flaw with living in this great state is that it’s a 10 hour drive back to my parents’ home.

But I’m lucky.  I have two brothers with wonderful wives who live close to my folks.  I didn’t have to worry about day-to-day coverage for my dad.  I visited as often as I could, but I felt lousy that I couldn’t do more.  Then Mike and I realized we could do something more—and we could do it right here in Idaho.

At the time, efforts to develop a state plan weren’t yielding any fruit, so we figured we’d try to get something going ourselves.  Mike, who has his master’s degree in gerontology, was already volunteering at Boise State University’s Center for the Study of Aging, so he got the ball rolling with its director, Sarah Toevs (who knows everybody, it seems).

Sarah put the word out, and over time, we had an impressive group of interested parties: a lobbyist, Teresa Molitor, who taught us the ins and outs of state government; a biology professor, Troy Rohn, who was doing Alzheimer’s research; a representative from AARP; the director of the Alzheimer’s chapter in our part of the state; and many others.

Signing ceremony with Governor Otter

What followed is a great example of a grass roots effort – all volunteer, all dedicated to achieving the goal of a state plan for Alzheimer’s disease and related dementias.  In corporate life, Mike was, among other things, a project director; he’s very organized. (You should see his desk—it doesn’t look like mine!) He drew on the various strengths of our group’s steering committee members and kept our collective “eye on the prize.”  Dr. Rohn, a popular speaker, began to educate Idahoans all over the state about the disease; Dr. Toevs headed a multi-pronged, statewide needs assessment.  We set up a website and wrote newsletters; we made sure our local media knew what we were doing.  And MacKenzie Rodgers, at the Greater Idaho chapter of the Alzheimer’s Association, played a large role in getting the word out about our progress.

After 2+ years and Lord knows how many hours of individual effort by dozens of people, our group submitted a plan to the Idaho State Legislature.  Just this month, they passed a concurrent resolution endorsing it! Our governor, Butch Otter, is also an enthusiastic supporter.  We reached our goal, but really, it’s only the beginning.  Next up is implementing the plan.

State plans like the one we developed for Idaho will help individuals and their families deal with the disease right now. For example, one of our primary goals is to increase awareness about resources available for caregivers and Idahoans with dementia.  We have already launched a new program,  complete with a media campaign, that helps our citizens reach the Alzheimer’s Association call center (which relays comprehensive statewide resources) through an easy-to-remember  phone number (211) that any Idahoan can call.

Mike and Randi holding a just signed Concurrent Resolution

Working on our state plan has been rewarding, but we can’t stop there.  Mike has been an Alzheimer’s Association Ambassador for two years, and we are both here at the Alzheimer’s Association Advocacy Forum in Washington, D.C., to persuade our legislators to vote for more research funding and to support the HOPE for Alzheimer’s Act, which will reinforce the access to information about Alzheimer’s that we are trying to achieve at the state level.

If we are going to beat this disease, we will have to work together—in every state, at every level.  My mom is 91 and beginning to show signs of memory loss.  I hear the whistle of that train and I’m doing all I can to get us off the track.

ADD YOUR VOICE!
Ask Congress to Support the HOPE for Alzheimer’s Act.

About the blog author: Louise Berlin is an Alzheimer’s Association Ambassador, along with her husband Mike.  They serve as a liaison between the Association and the office of Idaho Senator Mike Crapo. Together, they are working to make Alzheimer’s a state and federal priority.  This week, they are attending the 25th annual Alzheimer’s Association Advocacy Forum with more than 900 advocates to pay tribute to all those affected by Alzheimer’s and to help make real policy change .

The first year we performed, a small group of us got together and pitched in—sewing costumes, rehearsing and doing whatever was necessary to make it happen.  Almost two decades later, there are more than 100 people in the  cast. The experience has taught us that when people come together, the illumination is very bright.

This summer, on June 21, my husband, our family, our friends, and community will stay in motion from sunrise to sunset as a way of showing our commitment to a day when Alzheimer’s is no more.  It’s part of The Longest Day, an all-day event to raise awareness and funds for Alzheimer’s care, support and research. We’ve named our team “This Is Our Life” because we believe—similar to watching the church go from dark to light during the performance —if we all work together, we can illuminate the darkness of Alzheimer’s.  The more people willing to tend to the light, to spread awareness about Alzheimer’s and to get involved, the closer we come to a time when Alzheimer’s doesn’t exist.

Alzheimer’s is no stranger to our family.  Last year, right before his 59th birthday, my husband Steve was diagnosed with early-stage, younger-onset Alzheimer’s.  Five years earlier, his mother was diagnosed with Alzheimer’s.

In a way, Steve’s diagnosis is a gift.  Because we have this knowledge, we don’t waste a minute.  We know this time is sacred.  Steve’s quality of life is good—and we are living every day.

Time to Make a Difference

After  receiving a diagnosis of Alzheimer’s, there is so much you feel like you can’t do. There currently aren’t treatments to stop this horrible disease. There is no cure. But being part of The Longest Day is something we can do.  It is empowering to have this tangible event where we can take action.  And it’s action that really matters.The nearly $12,000 we raised last year helps support Alzheimer’s programs and care, and furthers the Alzheimer’s research going on throughout the world to try to find better treatment and a cure.

For us, the event is also about community. At the end of The Longest Day last year, we felt better about the future than we did at the beginning of that day. Every donation came with a note of support and love.  At sunset, 30 people gathered at our house for a celebration of all we accomplished. This year, we hope to have 50—or even 100.  When you bring people together, for important causes, unbelievable mountains can be moved—and our amazing community has shown us that they are here with us on this journey, that IS Our Life, until a day when Alzheimer’s is finished….or is just a memory!

Judy Johanson is care partner for her husband, Steve, who was diagnosed with younger-onset Alzheimer’s at age 59. Together with her family and friends, Judy is participating in Alzheimer’s Association The Longest Day^®, a sunrise-to-sunset event on June 21, 2013, to raise awareness and funds for Alzheimer’s care, support and research. Click here to follow Judy and her team, “This Is Our Life,” during this 16-hour event.

It is widely believed that the stress hormone corticotrophin-releasing factor (CRF) may have a protective effect on the brain, including the memory changes brought on by Alzheimer’s. CRF is associated with the production of stress and is found in high levels in people experiencing various forms of anxiety. Normal levels of CRF are beneficial to the brain, keeping cognitive abilities sharp and aiding the survival of nerve cells. Interestingly, previous studies have shown that people with Alzheimer’s disease have a reduced level of CRF.

In this paper, researchers used an experimental drug to prevent CRF from binding to the brain receptor called CRFR1 in mice with Alzheimer’s that were free from memory impairments, therefore blocking its effects. They discovered that the mice had an abnormal stress response with reduced anxiety and impaired learning. Moreover, they found that interrupting the hormone from binding to the CRFR1 receptor blocked the improvement of memory normally promoted by exercise. However, in mice with Alzheimer’s disease, moderate exercise restored the normal function of the CRF system allowing its memory enhancing effects.

The effects of stress on the brain have been studied for decades—ever since the initial work by Canadian endocrinologist Hans Selye, who coined the term”stress.”  Selye himself went on to publish 33 books and more than 1,600 scientific articles, almost all of them on the subject of stress.

This study of biological stress and its effects is a science that continues to make advances today by connecting stress to illness, including Alzheimer’s disease. Certainly, more research is needed to map out the functions of CRF and CRFR1 in normal aging as well as in Alzheimer’s, and the findings published here are compelling for such work.

Thanks for reading.

Michael S. Rafii, M.D., Ph.D.

Director, Memory Disorders Clinic
Associate Medical Core Director, Alzheimer’s Disease Cooperative Study
University of California San Diego

Pardon et al. Corticotropin-Releasing Factor Receptor 1 Activation During Exposure to Novelty Stress Protects Against Alzheimer’s Disease-Like Cognitive Decline in AßPP/PS1 Mice, Journal of Alzheimer’s Disease.

This post originally appeared in Alzheimer’s Insights, an ADCS Blog.

Learn More

• Prevention and Risk of Alzheimer’s Disease
• Healthy Volunteers Needed for Alzheimer’s Research
• What Is Alzheimer’s Disease

 What made this evening special were the headliners:  two rock stars in their respective medical specialties, Dr. Jill Kalman, a noted cardiologist at Mount Sinai Medical Center in New York, and Dr. Maria Carrillo, vice president of medical and scientific relations for the Alzheimer’s Association. Together, they addressed the twin terrors many women in the audience are concerned about:  heart disease and Alzheimer’s disease.

 The American Heart Association has done a superb job raising public awareness that heart disease is the No. 1 killer for women (and for men).  Although one in three women still die from heart disease, education about prevention is on the rise.

 As the red dress-clad Dr. Kalman told the audience, “The brain gives the heart its sight and the heart gives the brain its vision.”  Insightful words as the message for the evening was a dialogue about how Alzheimer’s advocates can take heart and follow the blueprint that heart disease (which has now evolved to heart health) has provided on how to combat an epidemic.

Dr. Carrillo was riveting as she outlined recent research being done, particularly in the area of familial Alzheimer’s disease also known as autosomal dominant Alzheimer’s disease (ADAD).  A comprehensive study is being conducted in families who carry a gene for Alzheimer’s, which, if inherited, guarantees they get the disease at a young age—30s, 40s or early 50s.  ADAD is very rare and the families who are affected by this type of Alzheimer’s usually are aware of the gene in their families.

 I was astounded to learn that ADAD family members who do develop Alzheimer’s disease do so at the exact same age their parent developed the disease.  If a parent was diagnosed at age 42, then a child who carries the gene also develops Alzheimer’s at age 42.  Dr Carrillo also discussed recent updates in the early diagnosis of sporadic Alzheimer’s disease, the most typical form of Alzheimer’s affecting more than 5 million Americans. This set off a skyrocket of hands in the audience and much discussion around whether families want to know and should know (if a test ever becomes widely available) how to predict your future Alzheimer’s diagnosis years ahead of your first warning signs.  Both doctors agreed – it is better to be informed than to be living in denial or ignorance.

While much debate always follows any exciting news, the results of this study are still years away.

Where does that leave us today? According to the docs, what we do know is that healthier lifestyle behaviors (exercise, nutrition, good sleep), knowledge of our family health histories, and reduction of stress in our lives will improve both heart health and brain health.

We can make lifestyle choices that keep both the heart and the brain healthy.  For instance, we know that a higher BMI (body mass index) and higher cholesterol (particularly the bad LDL kind) is certainly a risk factor for heart disease and may be a risk factor for Alzheimer’s disease.  We also know inflammation is bad – it is connected to the brain abnormality typical of Alzheimer’s patients and it is a common problem for victims of stroke and heart attack.  This is why it is so important for family caregivers to pay attention to both the heart and the head.

Often caregivers neglect themselves. Studies show caregivers are twice as likely as the general population to develop chronic illness – heart disease, diabetes, asthma and other health problems – because of prolonged stress.  Both doctors agreed family caregivers typically become more ill or even die before the demise of their loved one for whom they are caring.  Becoming a caregiver should be added to the list of risks for heart disease and a whole host of other health ailments.

As a caregiver, you use your heart to provide compassionate comfort and support to a loved one.  Now use your head – if you become ill or too exhausted to continue to care, what will become of your loved one and of you?  Avoid what I call the Caregiver Achilles heel – the inability to ask for help and accept the help offered.  Try creating an online volunteer help community such as the Alzheimer’s Association Care Team Calendar where friends and family can give you a break with the kids, help with your mom, or perform every day chores such as making a meal or raking the leaves when you are too overwhelmed to manage it all.

 Judy Gelfand was a Juilliard-trained pianist diagnosed with Alzheimer’s at age 62.  Her family cared for her for almost 10 years before she lost her battle with the disease.  And although she is gone, her legacy lives on in her family’s efforts to find the clues on how to stop Alzheimer’s in its tracks.  It is her daughter, Elizabeth, who created an evening to show how much our hearts and brains are connected in this fight.

The message is simple: Find the balance between caring for your loved one and caring for yourself.  Your heart and your head will love you for it.

Learn More:

• Genetics and Alzheimer’s
• Alzheimer’s and Dementia Caregiver Center
• Caregiver Message Boards

About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is author of A Cast of Caregivers, a book about celebrities who have been caregivers.

Last month, a Medicare advisory panel voted against medicare coverage for amyloid brain PET scans. Although the technology has been around for eight years, and numerous studies have shown its accuracy in detecting amyloid plaques, the committee felt that it did not improve health outcomes in patients. One major concern has been what to do with a positive result from the scan given that no current therapy exists to alter the progression of the disease.

It is expected that such a test would be used not for patients who have clear-cut Alzheimer’s dementia, but rather to identify those who are at greatest risk for developing the disease. There have been many studies that have shown the connection between amyloid in the brain and subsequent development of memory problems and Alzheimer’s dementia. However, the question still remains as to what to do once the scan is found to be positive. I would submit that there is much to be gained, not only from a positive scan, but even more so from a negative scan.

The test may, in fact, be most useful in patients with Mild Cognitive Impairment (MCI). About 50 percent of patients will progress to full-blown Alzheimer’s disease dementia within five years. This scan would help us determine to which group a patient belongs: MCI due to Alzheimer’s disease or not due to Alzheimer’s disease. Such early detection would allow patients and families to plan for the future as opposed to the cases I see routinely in the clinic where the first manifestation of memory impairment is something such as a medication overdose, financial mistakes or other functional issues with potentially serious complications.

As a clinician, I see great benefits not only in being able to accurately inform my patients about the cause of their cognitive impairment, but also being able to tell a patient with MCI that he or she does not have amyloid in the brain—that is, not on the path towards Alzheimer’s dementia. In these cases, we would initiate other studies as part of the work up to evaluate the cause of the patient’s cognitive impairment. In fact, just one day prior to the Medicare advisory panel meeting, the Alzheimer’s Association and the Society for Nuclear Medicine published guidelines specifying in which patients amyloid scans would have the greatest impact on outcome.

Until such coverage is available, we will rely on clinical history, neurological and cognitive evaluation, blood tests and volumetric MRI for evaluating patients with cognitive complaints. As disease-modifying treatments become available, the coverage of such scans will no longer be in question.

Michael S. Rafii, M.D., Ph.D.

Director, Memory Disorders Clinic
Associate Medical Core Director, Alzheimer’s Disease Cooperative Study
University of California San Diego

This post originally appeared in Alzheimer’s Insights, an ADCS Blog.

Learn More

• Find a Clinical Trial
• First Guidelines Published for Brain Amyloid Imaging in Alzheimer’s
• Diagnosing Alzheimer’s
• Brain Imaging

“I decided to focus my research on Alzheimer’s because it’s a disease of disparity, affecting some populations far more than others; its genetics aren’t well understood; and it had an impact on my family.

There’s a tremendous stigma about Alzheimer’s. People perceive it as affecting their social standing, their professional opportunities … they don’t want be associated with that kind of stigma, especially coming from a community that’s had an historical struggle to integrate.

I remember when people wouldn’t talk about cancer — it was taboo. Now people are proud to say they’re survivors. I want to create a buzz about Alzheimer’s so that people feel free to talk about it. I want more information out there and more literacy about the disease.

We need to do a better job educating people about how to care for those with Alzheimer’s — that will help with the embarrassment. And we need to provide resources to help caregivers who have an extraordinary challenge. This disease can strip a family of so many things, including their finances.

People also need to understand that the healthier we are, the healthier the brain will be. We need to increase physical activity, reduce stress, control high blood pressure and cholesterol, reduce obesity and eat a healthy diet. Often, these things are related to socioeconomics. But where we can make changes, we should. Education really is key.”

Dr. Byrd and her team were recently recognized with a $1 million grant for outreach activities. It will be used in part to support “Keeping Memories Alive” a project to bring better understanding about Alzheimer’s to all those with the disease, caregivers and policy makers.

Learn More:

• Overcoming Stigma
• African-Americans and Alzheimer’s
• Heart-Head Connection
• Find a Clinical Trial

Know the 10 warning signs of Alzheimer’s (PDF) Caregiver stress brochure (PDF)