Let’s Talk About Women and Alzheimer’s

Before Alzheimer’s came into my life, I considered it to be an equal opportunity disease affecting males and females the same way. During my years of involvement, I began to realize that Alzheimer’s had a bigger impact on women than on men.

The 2014 Alzheimer’s Disease Facts and Figures includes a “Special Report: Women and Alzheimer’s Disease.”  This report highlights several studies that bear witness to the higher burden the disease has on women.

Out of all Americans with Alzheimer’s, two-thirds are women. Why? The most obvious factor is age. Women have longer lifespans and are more likely to reach the age of highest risk. Women are more concerned than men about developing Alzheimer’s, and with good reason. A sixty-five year old woman has a 20 percent lifetime risk of developing dementia during her lifetime. I don’t know about you, but I’m not happy with those odds.

I admit that before Jim developed dementia, I never gave much consideration to how unfair Alzheimer’s is to the person with the disease and the caregiver. I had no concept of the breadth and scope of the disease—how all consuming it can be.

Being a caregiver for my husband was never a part of my vision of our life together. Jim never seemed like the type of person who would ever be anything but decisive, a man of strong convictions, protective, creative, and loving. Never in my wildest imagination could I have envisioned the turn our lives would take when he developed dementia. And certainly, if an Alzheimer’s type of dementia had ever entered my mind, I would have thought of him as an elderly man, not one who wouldn’t live to see his sixtieth birthday.

The job of caregiver falls more often on women. They are two and a half times more likely than men to be that caregiver who provides the around the clock care for a loved one who is in the late stages of the disease. These female caregivers are made up of daughters, wives, siblings, friends, and in younger onset—mothers. In a study of caregivers, indications are that females are substantially more likely than males to provide intimate personal care for their loved one with Alzheimer’s. Just like me, other women caregivers take on bathing, dressing, toileting, and changing adult diapers.

Caring for a loved one is hard work and stressful. Women report a higher level of emotional stress than men (62 percent vs. 52 percent) and greater physical stress (47 percent vs. 24 percent).

Women’s employment is affected adversely by caregiving. Twice as many women as men give up employment entirely to be caregivers. Seven times as many women as men go from working full-time to part-time in order to be a caregiver.

I was in my forties when Jim developed dementia and worked full-time. Quitting work wasn’t an option for me. There were times when the challenges of juggling a job and caregiving seemed overwhelming. Jim required only about four hours of sleep at night and that meant that I often went to work sleep deprived and emotionally drained.

When I hired caregivers to come into my home, they would often arrive late, or call at the last minute that they couldn’t come. Because they were undependable, it made me, as an employee, feel undependable too. Fortunately, my employer allowed me the flexibility I needed to work around caregiving issues. They knew that from time-to-time I would receive a phone call and have to go home to tend to the latest challenge—wandering, refusing to let someone else do something for him, or just to comfort him when he was scared or depressed.

I was young compared to most women who cared for spouses with Alzheimer’s. When I found myself feeling defeated, I couldn’t help but wonder how elderly ladies managed full-time caregiving.

Think about it—as a woman you are more likely to be a caregiver for a loved one with Alzheimer’s, and then, after years of caregiving, you are more likely to develop the disease. We women have a large stake in ending Alzheimer’s. Our brains matter to us, and we want to keep them healthy throughout our lifetimes. We need to join together as women, as caring people, as advocates to end Alzheimer’s now.

copyright © March 2014 by L.S. Fisher

http://earlyonset.blogspot.com

HOPE for Alzheimer’s

More than five million Americans have Alzheimer’s disease including 110,000 Missourians. With 10,000 baby boomers turning 65 each day, cases of Alzheimer’s are expected to skyrocket.

Alzheimer’s is the most expensive disease and has a negative impact on our nation’s economy. Alzheimer’s disease cost the nation $203 billion in 2013, and by 2050 it is expected to reach $1.2 trillion annually. The rising costs for Alzheimer’s care and services threaten to bankrupt Medicare and Medicaid. Alzheimer’s takes a toll on families—both financial and emotional.

News of a blood test to predict who will develop Alzheimer’s disease has been met with excitement and trepidation. By identifying those at risk for Alzheimer’s, researchers might find success with medications that have not worked in the later stages. New insights into how Alzheimer’s affects the brain would help researchers understand the disease better.

Without a cure, prevention, or effective treatment, the question arises—who would want to know if they were going to develop Alzheimer’s? Currently, fifty percent of Americans who have Alzheimer’s do not know they have the disease, but nearly ninety percent want to know if they have the disease. 

The Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act would provide Medicare services to diagnose Alzheimer’s disease. Early diagnosis would allow people to get their affairs in order while they had the capacity to do so. They could make lifestyle changes that research indicates could delay the onset. A healthy diet, exercise, and remaining socially engaged has many health benefits and has long been considered a boost for cognition.

The HOPE Act addresses problems with how the healthcare system currently works. Once a person has been diagnosed, HOPE for Alzheimer’s ensures that the newly diagnosed person and care providers will receive vital information with treatment options and support services available.  

This Act promotes open communication between patient, the medical team, and caregiver. It would require documentation of the diagnostic evaluation to be provided in the patient’s medical record. This is a huge improvement! With the complete medical history in hand, care providers can help manage other diseases the person with dementia might have.  

When my husband developed dementia at 49, the diagnostic process was lengthy. I kept a log of his symptoms, medications, drug reactions, and other health concerns. I shared this list with the many physicians involved in diagnosing and treating him. Not having this information would have adversely affected his care.

Being a caregiver for a loved one with dementia is a life-changing situation. Jim’s dementia is the reason I have been an advocate on state and national levels for the past fifteen years.

In April, my sister, Roberta Fischer and I will join more than 750 Alzheimer’s advocates in Washington, D.C. for the Advocacy Forum. Along with other Missouri advocates, we will visit Senator Roy Blunt (R), Senator Claire McCaskill (D), and Representative Vicky Hartzler (R). The fight to end Alzheimer’s is a bipartisan effort.

When legislation that makes so much common sense comes along, it is time for everyone who has experienced Alzheimer’s firsthand to write that email, make a phone call, or drop by a district office. I urge you to join your voice to ours by contacting your U.S. senators (S 709) and U.S. representative (HR 1507) and ask them to co-sponsor the HOPE for Alzheimer’s Act.

No one should ever be without HOPE.

copyright © March 2014 by L. S. Fisher

www.earlyonset.blogspot.com

Eric Rill: An Absent Mind

I often receive offers to endorse products or promote others’ agendas on my blog. I usually ignore or decline these offers. Recently, Maria Corder with Avante Press asked if I would like to read An Absent Mind, a novel about Alzheimer’s scheduled for a March 2014 release. I asked for an electronic version to read.

I am an avid reader and often have a couple of novels going at the same time. It so happened that I was reading two thrillers when she sent the manuscript to me. I downloaded the book onto my Kindle and hoped to get to it before long.

It takes an intriguing novel to get me to put aside a James Patterson book. When I opened An Absent Mind, I was hooked from the beginning when Saul Reimer began to tell his story:  “I was always considered a bit peculiar, so no one probably suspected anything until a dreary October afternoon when I removed my gray flannel trousers, opened the front door of my house, and ambled down the street.”

The most compelling dimension of this novel is the intertwining of the perspectives of Saul’s family—his wife Monique, his dependable daughter Florence, his narcissistic son Joey, and Dr. Tremblay. Each family member’s story unfolds as the Alzheimer’s diagnosis changes their lives, their relationships with each other, as well as with Saul. An Absent Mind does justice to exploring the thoughts, motivations, fears, and emotions of a person with dementia and his family members.

Saul takes you into the heart of a person who knows something is going terribly wrong. We feel his fear of what is going to happen, and his suspicion of family, especially Monique, plotting against him. Saul’s unfiltered views are often humorous as he makes observations about his family. About Joey, he says,  “…except Joey, who can’t sit for more than the time it takes him to gulp down a milk shake. I often wonder what happens when he’s in the bathroom. With his attention span, he probably can’t sit still until it’s time to reach for the toilet paper.” 

Florence is the Reimer child with a strong sense of responsibility. She and her irresponsible brother grew apart over the years, but through necessity they form a fragile relationship. The family pulls together to try to figure out how to deal with Saul. They disagree on the best approach to make those difficult decisions like how to take away the car keys. Each one, in his or her own way, has to find a way to adjust to the changes in Saul during his downward spiral into the Alzheimer’s abyss.

I have to laugh about Monique’s account of Saul ordering magazine subscriptions, aluminum siding, and hired carpet cleaners when they had oak floors. It brings back memories of Jim, the telemarketer’s best friend.

It is easy for me to relate to Monique—her frustration as she struggles to care for Saul at home, and her guilt when she realizes it is “time” to find a better solution. I understand her need to be present daily at the facility, feeding Saul and watching after him. I understand her frustration with Joey when he doesn’t seem to do his fair share. My heart aches for Monique when Saul arises from his apathetic state for a brief moment of clarity and calls her chou-fleur. This powerful moment demonstrates that Alzheimer’s erases a lifetime of memories, but doesn’t empty the soul of love.

The mark of a good novel is one that makes you laugh and cry, and An Absent Mind hits the target dead center. It is obvious Eric Rill knows the devastation of a loved one with Alzheimer’s, and yet tells this story in an uplifting manner. An Absent Mind is riveting from beginning to end as we walk the journey with the Reimer family.

copyright © March 2014 by L.S. Fisher

http://earlyonset.blogspot.com

Eric Rill’s An Absent Mind is available on Amazon.com 

Seth Rogan Livens Up Senate Hearing on Alzheimer’s

Well, the purpose of having a celebrity spokesperson is to get attention. Having Seth Rogen testify at the February 26 Senate Appropriations Subcommittee on Labor, Health & Human Services met that goal. In his opening remarks, Rogen admitted that being called an expert in something was “cool.” He said,  “I don’t know if you know who I am at all. You told me you never saw Knocked Up, Chairman, so…it’s a little insulting.” Senator Tom Harkin showed uncharacteristic humor when he wagered that this was the first time in a congressional hearing that the words ‘knocked up’ had been heard.

I’ve been to several Senate Hearings on Alzheimer’s while at the Advocacy Forum in Washington, D.C. I don’t recall any where the audience was laughing. These are usually deadly serious meetings about a deadly disease. I can remember one hearing where tissue boxes were being passed up and down the rows when a young lady testified about familial early-onset Alzheimer’s. I believe it had to be one of the most tragic stories I had ever heard. Her entire family had a 50/50 chance of facing the same unrelenting fatal disease.

I watched the Webcast of the hearing and although Rogen received the bulk of the media attention, he was not the only person to testify. Scientists and economists provided extensive testimony on  Alzheimer’s and answered the senators’ questions.   

Dr. Richard Hodes (NIH) talked about research on how a healthy lifestyle could be an intervention for Alzheimer’s. Although still early in the research process, he recommended diet and exercise as a way to improve overall health.

One of the people to testify was former Congressman Dennis Moore. I’ve met Dennis on previous D.C. trips when he joined Missouri advocates to talk to our Senators. Dennis is a warm, personable man who has a heartfelt way of connecting with legislators when he speaks about Alzheimer’s. Seeing one of their own with early onset Alzheimer’s is an eye-opener for many of them.

Another person who testified, Dr. Michael Hurd, researcher for the Rand Corporation, talked about the monetary cost of dementia. The annual cost of dementia in 2010 was $109 billion. When you factor in informal care, the amount increases to $160-$250 billion. Alzheimer’s is the most costly disease.  

National Institute of Health Director Dr. Francis Collins who explained the limitation on Alzheimer’s research was simply funding. Only one in six peer-reviewed research projects are funded. The brightest minds often research other diseases that are well funded.

Simply put, our country has not provided the resources to find a cure for Alzheimer’s. Maybe it’s because dementia is a disease that still has a stigma—or as Rogen said, “Americans whisper the word Alzheimer’s, because their government whispers the word Alzheimer’s.”

Laced in with his humorous remarks, which is indeed an attention getter, Rogen shared the story of his mother-in-law who developed early onset Alzheimer’s at fifty-five. By sixty, she was unable to speak, feed or dress herself. While that image sank in, Rogen admitted that the dire situation caused him, “a lazy, self-involved, generally self-medicated man-child to start an entire charity organization.” His Hilarity for Charity raises money for Alzheimer’s research and for families dealing with dementia.

Senator Moran began the hearing with Alzheimer’s information, but I want to leave you with some of his thoughts. Every 68 seconds another American develops Alzheimer’s. In the United States more than 5.2 million, and 44 million worldwide have the disease. Alzheimer’s is the sixth leading cause of death in the United States. It has no cure, no diagnostic test, and no treatment. A Rand Corporation study predicts that within 30 years the cost of dementia is expected to bypass cancer and heart disease. Even a five-year delay in the onset, would mean a total savings of $447 billion by 2050. The effort to find effective treatments and a cure causes the most fiscally conservative and those who are the most caring and compassionate to come together. Moran said that we need to fully commit to finding a cure in the next decade.  He called finding a cure “The defining challenge of our generation.”  Moran said, “The gift that we all could provide for every American, for every American family, is a special gift…it is the gift of hope.”  

To watch the hearing:

http://www.appropriations.senate.gov/webcasts.cfm?method=webcasts.view&id=ac30b75a-65a5-4958-8260-e64f070beaf7

copyright © March 2014 by L.S. Fisher

http://earlyonset.blogspot.com