Dottens go to Washington to ENDALZ
Mike and Cheryl Dotten of Lake Oswego take Alzheimer's disease personally. Cheryl's grandmother and father both died of Alzheimer's, and the couple believes most everyone has some connection to the disease.
"It's personal to me, too," said Sarah Kofman, the Dottens' daughter, who is the public policy director for the Alzheimer's Association serving Oregon and southwest Washington. As advocates for the Alzheimer's Association, the family participated in the Alzheimer's Impact Movement (AIM) Advocacy Forum in Washington D.C. earlier this month.
"The trip to Washington, D.C. was incredibly inspiring and moving," Kofman said. "It is important to work directly with our elected officials and champion causes that are important to us. Our advocates are engaged and are concerned about what's happening in Congress and want to let their elected officials know how what they do affects lives."
AIM is the advocacy arm of the Alzheimer's Association. Its mission is to advance and develop policies to overcome Alzheimer's disease through increased investment in research, enhanced care and improved support.
Alzheimer's disease is a public health crisis. According to the Alzheimer's Association, an estimated 5.8 million Americans of all ages have Alzheimer's, including 67,000 Oregonians. Without medical breakthroughs this number is expected to triple in a generation.
Alzheimer's is referred to as "America's most expensive disease." In 2019, Alzheimer's and other dementias will cost the nation $290 billion. That number could escalate to $1.1 trillion by 2050.
The Dottens were just two of the 1,200 AIM advocates, who, clad in Alzheimer's Association signature purple T-shirts, converged on Capitol Hill to meet with legislators to present their requests.
"It was amazing," said Cheryl. "This is a cause that has bipartisan support, as everyone is affected by Alzheimer's."
The first "ask" was for an additional $350 million in fiscal year 2020 for Alzheimer's research activities at the National Institutes of Health; the second was for $20 million in fiscal year 2020 to implement the BOLD Infrastructure for Alzheimer's Act at the Centers for Disease Control and Prevention. The third was support for the bipartisan Improving HOPE for Alzheimer's Act, which would help educate clinicians on Alzheimer's and dementia care planning services through Medicare; and the fourth was to cosponsor Younger-Onset Alzheimer's Disease Act of 2019, which would allow individuals under the age of 60 to be eligible to access programs under the Older Americans Act.
U.S. Rep. Earl Blumenauer, D-Oregon, was one of several members of Congress who introduced H.R. 1873, the Improving HOPE for Alzheimer's Act, March 27, just a few days before the AIM Advocacy Forum began. This bipartisan legislation would require the Department of Health and Human Services (HHS) to inform healthcare providers about care planning benefits available through Medicare. The bill would also require HHS to identify other barriers individuals may be facing in accessing care planning.
"Alzheimer's is the signature disease of boomers, and it's a disease that touches everybody," said Blumenauer when introducing the bill. "Prevention, early intervention and care planning with health care providers are key to cutting in half the suffering, the cost and the trauma that individuals and their families go through every day. The Improving HOPE for Alzheimer's Act will result in better treatment outcomes and help families to better face the challenges that an Alzheimer's diagnosis brings."
In addition to Blumenauer, more than a dozen Oregon delegates met with Sen. Ron Wyden, Sen. Jeff Merkley, Rep. Peter DeFazio and Rep. Kurt Schrader.
The delegates presented their requests and then shared their personal stories of how Alzheimer's has impacted their lives.
Cheryl's father, Don Calvin, died of Alzheimer's at age 67.
"He was a geologist and loved looking at maps," she said. She remembers being told by the neurologist that her father would be released in three days. He required more care than what his wife could give at home, so the Dottens began looking for a care facility. They returned to hospital later that day to learn her father had been released.
"There was no discharge plan, no care plan and no place to go," Cheryl said. The only room they could find on such short notice was a less than satisfactory care facility kitty-corner from the hospital.
"The road was a six-lane highway with cars traveling at 50 miles per hour," said Mike. "He wasn't able to fit into the rental car, and since he had been discharged they couldn't transport him by ambulance, so we pushed him across the busy highway in a wheelchair they let us borrow."
Experiences like this will be avoided if the Improving HOPE for Alzheimer's Act is enacted.
The Alzheimer's Association reports that two out of three people diagnosed with Alzheimer's are women and two-thirds of the caregivers of those afflicted with Alzheimer's are women. Specifically, one third of dementia caregivers are daughters.
The Dottens said their schedule in Washington D.C. was packed, but noted that the caregivers among the advocates considered the load light, compared to their regular routine.
"We went from early in the morning until after dinner each day," said Mike. "The regular caregivers (of Alzheimer's patients) were thinking they had an easy schedule for a change."
Alzheimer's disease is especially hard on caregivers; patients needs to be watched 24/7 so they don't wander off or put themselves or others in danger. According to Alzheimer's Association 186,000 Americans served as caregivers for Alzheimer's patients in 2018, representing 212,000,000 hours of unpaid care at a value of $2,682,000,000.
The Alzheimer's Association has a wealth of free resources available including a 24-hour helpline at 800-272-3900 and the website alz.org.
At this point there is no cure for Alzheimer's disease but advocates are hopeful that with funded research one will be available.
"That first survivor is out there," said Cheryl. "We are advocating for our children and grandchildren. We know Alzheimer's is in our family. We need a cure before it hits them."
"At this point Alzheimer's is always fatal," said Mike. "We have to make an investment (in research to find a cure), or it will break Medicare."
The Alzheimer's Association is the leading voluntary health organization in Alzheimer's care, support and research. It is the largest nonprofit funder of Alzheimer's research. Its vision is a world without Alzheimer's.
To donate funds, join AIM and learn more visit alz.org.
10 Early Signs and Symptoms of Alzheimer's
Memory loss that disrupts daily life may be a symptom of Alzheimer's or other dementia. Alzheimer's is a brain disease that causes a slow decline in memory, thinking and reasoning skills. There are 10 warning signs and symptoms. If you notice them, don't ignore them. Schedule an appointment with your doctor.1. Memory loss that disrupts daily life. A common sign is forgetting recently learned information, or asking for the same information over and over.
2. Challenges in planning or problem solving. A common sign is having difficulty concentrating or taking much longer to do things than they did before.
3. Difficulty completing familiar tasks such as driving to a familiar place.
4. Confusion with time or place. Forgetting where they are or how they got there.
5. Trouble understanding visual images or spatial relationships. Having difficulty reading, judging distance or determining color or contrast can be an indicator.
6. New problems with words when speaking or writing. People with Alzheimer's have trouble following or joining a conversation, or may stop in the middle of a conversation and have no idea how to continue, or repeat themselves.
7. Misplacing things and losing the ability to retrace steps. People with Alzheimer's may put things in unusual places; they may accuse others of stealing.
8. Decreased or poor judgement. They may use poor judgement when dealing with money, giving large amounts to telemarketers, or pay less attention to grooming or bathing.
9. Withdrawal from work or social activities. They may have trouble keeping up with a favorite sports team or remembering how to complete a favorite hobby.
10. Changes in mood and personality. People with Alzheimer's can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, work, with friends or in places where they are out of their comfort zone.
If you notice any of the 10 Warning Signs of Alzheimer's in yourself or someone you know schedule an appointment with your doctor.