CNN’s Crowley shares personal story of her mother’s Alzheimer’s

Advocates see Hill Day as an opportunity for meaningful action

March 25, 2015

Nearly 1,000 Alzheimer’s advocates clad in purple sashes headed to Capitol Hill on March 25 for Hill Day — the culmination of the 27th Alzheimer’s Association Advocacy Forum in Washington, D.C. This year’s event was the largest to date, with a record-breaking number of advocates from all 50 states attending to learn about Alzheimer’s policy priorities and visit with their elected officials.

With the December 2014 enactment of the Alzheimer’s Accountability Act, which allows scientists at the National Institutes of Health (NIH) to directly communicate with Congress about the resources needed to meet the goals of the National Plan to Address Alzheimer’s Disease, the mood among advocates was hopeful and determined.

A delegation from Oregon met with Sen. Ron Wyden (D-Ore.), who supported the additional $25 million in funding for Alzheimer’s research in the fiscal year 2015 budget.

Mark Donham of Lake Oswego, Oregon, cared for his wife, Chris, who was diagnosed with younger-onset Alzheimer’s disease at age 40 and passed away at 54. Donham turned his grief into action, serving as the board chair for the Alzheimer’s Association Oregon Chapter and organizing a support group for men. He has attended the Forum for seven years.

"When I come to the Forum, I’m representing all of the Oregonians affected by Alzheimer’s disease," he said. "Although the Alzheimer’s Accountability Act is a keystone, we have to continue advocating for increased research funding."

Mark was joined by Dawn and Doug Frazier of Prineville, Oregon, who also brought their grandson, Clay, age 12. Dawn and Doug lost their eldest daughter and Clay’s mother, Rhonda, to younger-onset Alzheimer’s when she was just 34 years old – a very rare occurrence.

"As parents, something just seemed off to us," said Dawn. "She was a college graduate but couldn’t find a job. She couldn’t remember where her car was parked."

For Dawn, attending her first Forum is an opportunity to raise awareness that Alzheimer’s is "not just an old person’s disease." She can experience and feel the camaraderie that exists among her fellow advocates.

"I’m so impressed by all of the people that are here," she said. "This is a way for us to gather together and be part of the action."

The delegation sat down to share their stories with legislative aide Lauren Goldschmidt. The advocates took turns sharing information, including an ask for $300 million in additional funding for Alzheimer’s research at NIH, and support of the bipartisan Health Outcomes, Planning, and Education (HOPE) for Alzheimer's Act, which was introduced earlier that morning.

Jim Martin, 59, of Portland, Oregon, said passage of the HOPE for Alzheimer’s Act would provide a sense of security to combat what he faces in the future. In 2010, he suffered a traumatic brain injury, and despite what doctors coined "a remarkable recovery," he has memory loss and an increased risk of developing dementia. A former trial lawyer, Martin uses his professional skills to share his story and advocate on behalf of all those affected by Alzheimer’s and other dementias.

For Martin, who lives alone and has adult children in Chile and San Francisco, the HOPE for Alzheimer’s Act would ensure better communication about his medical history whenever and wherever he should need to receive care in the future. Newly diagnosed Medicare beneficiaries and their caregivers would receive comprehensive care planning services and will require their diagnosis to be documented in their medical record. It will also help inform health care providers about what steps should be taken following a diagnosis, which will enhance assistance for people with Alzheimer's and their caregivers.

"I want the senator to support the HOPE (for Alzheimer’s) Act, so systems will be in place to help me with care," Martin said. "It could make such a difference in so many people’s lives."

Advocates from Kentucky visited with Rep. Brett Guthrie (R-Ky.) to present him with the Alzheimer’s Association Humanitarian Award, which recognizes public officials who have made a significant policy contribution to advancements in research and enhanced care and support for Alzheimer’s disease. Guthrie received this honor for his leadership in co-sponsoring the Alzheimer’s Accountability Act in the House along with Rep. Paul Tonko (D-N.Y.). The Senate co-sponsors, Sen. Ed Markey (D-Mass.) and Sen. Mike Crapo (R-Idaho), also received the award.

The cause is personal for Guthrie. Both his great uncle and his wife’s grandfather had Alzheimer’s, and his conversations with advocates reflected his familiarity with the disease and the devastation it causes families.

Advocate Christy L'Heureux of Bowling Green, Kentucky, doesn’t have a familial connection to the disease, she does have a personal one: She works as a case manager for Home Instead Senior Care.

"I don’t have one someone to care for," she said. "I have over 100 someones, and many of them have Alzheimer’s disease." In her role as a professional caregiver, L'Heureux acts a resource, providing a wide range of advice regarding Alzheimer’s and acting as a liaison for the many long-distance caregivers who are unable to be with their family members every day.

"These people are my extended family. I worry for the family. I mourn with them. I become a shoulder for them to cry on," she said. "And when I lose one of them, I lose a family member, over and over again. Alzheimer’s is heartbreaking."

L'Heureux serves as an Alzheimer’s Association Ambassador, an advocate who works to directly maintain a relationship with a specific member of Congress. Christy is an Ambassador to Guthrie.

"My job is to be a constant source of information," she said. "He wants to fight the good fight, but he needs the information. It’s like he’s our champion, and we’re the lieutenants."

L'Heureux gave Guthrie information provided by the Association that included illustrations of the rising costs of Alzheimer’s, the disparity between the funds spent on research as compared to the cost of care and the devastating loss of life caused by the disease.

Guthrie appreciated the collateral, commenting that some of the graphics really "said it all," and agreed to review the information in detail to see if he could lend his support. He also encouraged the advocates to keep sharing their stories.

"I always tell people, ‘Tell your story, that’s what we remember when you walk out,’" he said.

Many advocates concluded their day on the Hill by attending a hearing convened by the U.S. Senate Special Committee on Aging, titled "The Fight Against Alzheimer’s Disease: Are We on Track to a Treatment by 2025?" A crowd filled the hearing room to capacity to encourage additional funding for Alzheimer’s research, express concern over the rising cost of the disease to the nation and show their support of the HOPE for Alzheimer’s Act.

The hearing featured personal testimony from Dr. Ronald Petersen of the Mayo Clinic, a leading Alzheimer’s researcher and Alzheimer’s Association National Board member; B. Smith, former model, restaurateur, retailer, author and actor, who has been diagnosed with younger-onset Alzheimer’s disease; and Smith’s husband, Dan Gasby.

When speaking to the committee, chaired by Sen. Susan Collins (R-Maine) and ranking member Sen. Claire McCaskill (D-Mo.), Smith said, "I’ve been a model and a TV personality, but now I have the most important job. I’m here because I have Alzheimer’s." Gasby shared his experience at the Alzheimer’s Association National Alzheimer’s Dinner the evening before. "What I saw there last night was a team…We’re at the tipping point. We’re going to push this over," said Gasby.

The committee also heard testimony from Richard J. Hodes, M.D., director of the National Institute on Aging at the NIH; Heidi R. Weirman, M.D., division director of geriatrics at the Maine Medical Center; and Kimberly Stemley, Alzheimer’s Association advocate and chief financial officer of Rx Outreach in St. Louis, Missouri.

Stemley shared her challenges as an Alzheimer’s caregiver for her mother. "Today, my mother is living in a skilled nursing facility in Missouri," she said. "I’m confident that she is receiving appropriate care in the right setting. However, getting to this point was a challenge, and there are many families out there who never get the care and support they desperately need to face this terrible disease."

After hearing Stemley’s testimony and the remarks of the rest of the panel, McCaskill responded, "Not funding research is dumb, because it’s going to cost us a lot of money. Refusing to fund care is cruel."

The importance of Alzheimer’s as a bipartisan issue on Capitol Hill was also apparent at the hearing, as many committee members attended to listen to expert testimony and question the witnesses. Collins and McCaskill were joined by Sens. Bill Nelson (D-Fla.), Sheldon Whitehouse (D-R.I.), Joe Donnelly (D-Ind.), Tom Cotton (R-Ark.), Elizabeth Warren (D-Mass.), Tim Scott (R-S.C.), Tim Kaine (D-Va.), Richard Blumenthal (D-Conn.), Robert Casey (D-Pa.) and Thom Tillis (R-N.C.).

Toward the end of the hearing, Collins addressed the sea of advocates dressed in purple in the audience, letting them know that their voices were heard.

"It’s my hope that someday soon the color purple will also represent those who survive Alzheimer’s," she said.

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