Grant to DIAN for Early Onset Alzheimer’s Research

Alzheimer’s is a worldwide disease, and the Dominantly Inherited Alzheimer’s Network (DIAN) is focused on familial Alzheimer’s that typically affects people in their thirties, forties, or fifties. The Alzheimer’s Association awarded a $4.2 million research grant to study this form of young onset Alzheimer’s.

Studying hereditary Alzheimer’s can speed up discovery of effective treatments, or hopefully, prevention. Although inherited Alzheimer’s is rare, it is the only truly predictable form of the disease. When a parent has the genetic mutation that causes hereditary Alzheimer’s, children have a 50/50 chance of developing the disease. Genetic testing can determine whether a person will develop inherited Alzheimer's.

The Alzheimer’s grant will be used to conduct experimental drug therapies internationally. The participants will be those who are destined to develop Alzheimer’s, but do not exhibit symptoms. The hope is to develop therapies that prevent the disease from happening.

The eleven groups that make up the DIAN network are following 150 participants with familial Alzheimer’s. Researchers have discovered that measurable brain changes can appear as much as 20 years before symptoms. Randy Bateman, MD, and associate professor of Neurology at Washington University School of Medicine, St. Louis, Missouri, explained the importance of a network of research facilities. “No single research center has sufficient numbers of people with dominantly inherited Alzheimer’s to conduct a large enough study to generate meaningful data.”

I met Randy in Washington DC several years ago when he attended the Alzheimer’s Action Summit and joined our Missouri group of advocates to visit our senators. Randy was definitely an asset to our group. We had our own researcher to share first-hand knowledge about treatments coming down the pipeline.

Although the genetic form of Alzheimer’s affects only 1% of people with the disease, the ability to study this group before onset gives a sliver of hope to all people with Alzheimer’s. Anything that will speed up the time it takes for Alzheimer’s disease therapy to become available to the public is good news.

Life is truly heartbreaking for those families dealing with familial Alzheimer’s. Even the ones who escape the disease through genetic roulette may have a parent, aunts and uncles, cousins, or siblings who develop the disease. Sometimes the ones who do not develop the disease spend a lifetime caring for their relatives who do.

I recently received an email from  Jessica whose husband tested positive for familial Alzheimer’s. He has not yet developed the disease, but she is already worried about him and her children’s future. The emotional turmoil of that family is immeasurable.

My friend Karen took loving care of her husband Mike throughout his battle with inherited Alzheimer’s. He passed away in February, and now she is at loose ends. “I thought I was ready, but it really hit me hard,” she said. Yes, Karen, I know exactly how you feel. I don’t think we can ever be ready to let go. Caregiving becomes such a part of life that we adapt to the new reality and that becomes our way to put love into action.

Kudos to the Alzheimer’s Association for providing research dollars to study this heartbreaking disease. My sincere wish is that Randy and his cohorts will be able to use this research to find a way to prevent Jessica’s or Karen’s children from developing inherited Alzheimer’s.

Copyright © March 2012 L.S. Fisher

http://earlyonset.blogspot.com 

Not According to Plan

I looked forward to St. Patrick’s Day and expected a day of good old Irish fun. Saturday would be a time to kickback and make the most of being Irish for a day. After all, I only get to wear my green nail polish twice a year—Halloween and St. Patrick’s Day. I figure at that rate, the bottle will last until I’m at least 150.

My plans changed when Uncle Jimmy passed away. His funeral was Saturday in Versailles where my mother lives. While I was there, I planned to visit Mom and then drop by the nursing home to see my brother Donnie.

The day started out beautifully. I left home dressed in green, of course, and wearing sandals. Yes, sandals. Here winter isn’t even officially over, and I take off for the day in open toed shoes.

The luck of the Irish wasn’t riding in the car with me. The closer I got to Versailles, the darker the sky. Rumbles of thunder, and streaks of lightning were followed by a downpour. The wind picked up, driving the rain with the force of a robo wash. I pulled off to a side road while first rain, then hail, pelted my car.

The storm passed, as storms always do, and I drove on. The bittersweet nature of funerals is that although it is a sad occasion, it is also family time. Many hugs later, the services began, and I remembered happier days.

Uncle Jimmy was a family recording historian, just like his namesake, my husband Jim. Several years ago, they took over my living room for weeks while Uncle Jimmy used a projector to roll his old 8 mm film and Jim videotaped the old home movies. They laughed and narrated, telling stories about the people pictured on the grainy black and white film.

After the funeral, Mom and I visited Donnie who was not having a good day. The nurse injected his medication into the feeding tube, and he drifted off to sleep. My mom sat on the edge of his bed, tears streaming down her face.

As we walked down the hallway, I said, “Mom, I think you need to do something to take your mind off this for a while. Why don’t I take you to the boat?” My mom loves to go to the casino and it always cheers her up.

This time, she just shrugged and said without enthusiasm, “Oh, if you want to go.”

I told Mom to call Aunt Lebetta and ask her to go. “She needs cheering up too.” My cousin Bonnie had just been diagnosed with lung cancer and further tests showed tumors in her brain. After spending the morning at the hospital, Aunt Lebetta was inconsolable about the bad news that only seemed to get worse.

 Mom called. “She just doesn’t think she can go.”

“Tell her that you ‘old hairpins’ need to do something to get your minds off your problems,” I said. “Reta would expect me to do that.” My cousin Reta coined the nickname “old hairpins” for her two beloved aunts.

“Bonnie is hallucinating,” Aunt Lebetta said when she got in the car. Bonnie told them that her dad, Uncle Melvon, had come to see her and told her not to be afraid. Bonnie talked about seeing butterflies.

“You know what the butterflies are, don’t you?” my mom asked. “Melvon saw a butterfly come out of its cocoon once, and he said that is what death would be like—you come up out of your shell and fly away a beautiful butterfly.”

After a few hours at the casino, my mom and aunt showed me their winning tickets. Since they seem to play until all the money is gone, I confiscated their tickets. “I’ll give these to you when we get ready to walk out the door,” I said handing them each $20. “When this is gone, we’re leaving.” They walked out with smiles on their faces, worries pushed aside for a few moments.

Today, the message at church was about the tribulations of Job. Our minister told a story about a man who asked a good friend with terminal cancer, “How does it feel to know you’re dying?”

The friend answered with a question, “How does it feel to think you are not?”

Driving home from church, I thought about how unfair life can be. Nobody plans to have a terminal illness like Alzheimer’s or cancer. Life itself is terminal and just doesn’t go according to plan. No matter how Job-like life is, we can take comfort knowing that when the time comes we will rise up out of our ugly cocoons and emerge as beautiful butterflies.

Copyright © March 2012 by L.S. Fisher

http://earlyonset.blogspot.com

The High Cost of Alzheimer’s Disease

The latest Alzheimer’s Association Fact Sheet gives hard data about the high cost of living with Alzheimer’s disease. The Fact Sheet begins with the statement:  The graying of America means the bankrupting of America – and Alzheimer’s is a major reason why.

In 2012, caring for Alzheimer’s will cost $200 billion. Medicare and Medicaid take the brunt of these costs. Medicare bears the largest share, $104.5 billion, and Medicaid is in second place with $35.5 billion.

Those who have a loved one with an Alzheimer’s type of dementia know that although the government looks like the biggest loser on paper, families take a harder hit with both emotional and financial tolls.

More than 15 million caregivers provide 17 billion hours worth of unpaid caregiving. The monetary value of this caregiving is $210 billion—the emotional cost cannot be measured.

Alzheimer’s is not just an expensive disease; it is costly. The highest costs are not in dollars, but in broken relationships as families and caregivers adjust to a new reality.

As hard as it is to provide care for a loved one with Alzheimer’s, 60 percent of caregivers find emotional stress to be the hardest part of caregivng. A third of caregivers report being depressed. Alzheimer’s caregivers have increased health problems directly related to being a caregiver. Nationally, this translates into an additional $7.8 billion health care costs for the caregiver.

Have you hugged a caregiver today? Better yet, have you offered help, and meant it? I’m not talking about “If there’s anything I can do…” without following up to find out what you really can do to help. I’m referring to watching a loved one for a few hours to relieve the primary caregiver. Family members should work out a schedule so that each member can contribute to the wellbeing of both the caregiver and the person with dementia.

A woman I met a few years ago thought it was totally her dad’s responsibility to look after her mother. After all, he was the one who promised to care for her “in sickness and in health.” She stubbornly refused to help her dad. To be perfectly honest, I felt like shaking her, but instead I encouraged her to take on more responsibility for her mother’s care. She did finally help after her dad was hospitalized from the stress of caring for his wife.

I’ve seen families pull together for the good of the person with Alzheimer’s. It takes more than one person to provide 24-hour-a-day care. I was lucky that Jim’s family, my family, and our family were available and willing to help. I could not possibly have kept Jim home as long as I did without this family support.

Not all families work as a team, some are shattered by arguments over caregiving, or even whether their family member has dementia. Denial is common and it is hard to acknowledge that someone you love could have a disease that could erase memories.

  

No matter how drastically a person with dementia may change, they can still feel your love. As hard as being a caregiver is, and although it may seem a thankless job at times, your reward comes from knowing that you’ve done your very best. That is something that will stick with you long after your loved one is gone, and you can look back with no regrets.

Copyright © March 2012 by L.S. Fisher

www.earlyonset.blogspot.com

Memory Day – Capitol Here We Come

Wednesday was Memory Day and hundreds of advocates converged on the Missouri State Capitol. After being briefed on the issue we were to discuss with our legislators, we donned our purple Alzheimer’s Association “beauty queen” banners and set off to deliver packets.

My favorite part of Memory Day is meeting with other advocates who have become my friends over the years. Along with people that I expected to see, I noted a familiar face in the group surrounding Linda Newkirk, the executive director of the Mid-Missouri Chapter.

“Aren’t you in the wrong group?” I asked Evelyn a fellow Business Women of Missouri member.

“I’ve been involved in the walk for years,” she said as I gave her a hug. This wasn’t the first trip to Memory Day for either of us, but somehow this was the first time we had noticed each other.

Before heading out to our appointments, we helped honor some members of our state government who have moved our cause forward. First up was Lt. Govenor Peter Kinder who served as the chairman of the Missouri Alzheimer’s Plan Task Force. An executive summary of this plan was included in the packet for the legislators. This report crafted by the 19-member task force gives some of the highlights of the past year.

The Missouri Alzheimer’s chapters awarded Leadership of the Year Awards to Senator Kurt Schaefer and Representative Margo McNeill. Patti, Janie and I had to leave before the ceremony ended to be on time for our first appointment.

We had only one priority this year: increase the Alzheimer’s Service Grants to $300,000. In 2006, we received $539,000. This was reduced 25% in 2010, and this year’s budgeted amount is $150,000. These grant funds were used by the Missouri Chapters to provide respite care for families with loved ones living at home.

I can speak from experience about the importance of respite funding. The only financial help we qualified for was respite from our local chapter. Jim was too young to qualify for any of the senior services that are in place to help the elderly.

Most of the legislators were sympathetic to our request to reinstate Service Grants, but as one aide put it, “Tell us where the money is going to come from and we might consider it.” I’m sure they have groups knocking on their door every day asking for more funding, or at least to not have funding cut. It seems like senior services are often the first items to hit the chopping block.

I was more impressed with my representative, Calib Jones, who took time to sit and talk with us, although he was on his way to a committee meeting. After we explained the shortfall, he said, “I’m not on the budget committee, but I’ll certainly talk to someone who is.”

It would seem to be a logical choice to fund respite to help caregivers keep their loved ones at home longer. Sixty percent of Missourians placed in nursing homes depend on Medicaid to pay for their care. Isn’t it more logical to spend $2.45 per year for each of the 110,000 Missourians who have Alzheimer’s than it is to spend on the average more than $51,000 per person for nursing home care? With nursing home care calculated at roughly $140 per day, if 307 people delayed going into a nursing home for one week, the state would break even.

After a whirlwind of visits, we went outside and lined up on the steps for a photo op. The strong wind not only sent hair flying out of control, but nearly gusted some of the advocates right off the steps.

I was tired after the visits and my feet hurt. On the walk back to my hotel room, I thought about how necessary it is to get boots on the ground for such an important service. Hopefully, the economics of providing respite care make sense to the legislators, and when they vote on the budget they will remember purple banners and the advocates who came to visit on Memory Day 2012.

Copyright © March 2012 L. S. Fisher

http://earlyonset.blogspot.com