Alzheimer's risk weighs on family

BARRINGTON — Last month, the best and the brightest minds in Alzheimer’s research came together for an international conference in Toronto.

The Alzheimer’s Association International Conference showcased the results of a Phase 3 trial for a drug from TauRx Therapeuticals, found to benefit cognitive and functional outcomes and slow brain atrophy, according to the association.

The conference also detailed how early treatment for Alzheimer’s disease can reduce Medicare costs and mortality rates and additional evidence that changes in odor identification can predict cognitive decline or dementia.

For members of the Reimer family of Barrington, news of new developments in dealing with the disease was comforting. But they won't help family patriarch Richard Reimer, who was diagnosed with early-onset Alzheimer’s one month before his 49th birthday in October 2008.

Richard Reimer doesn’t have a lot of company: Only 5 percent of people with Alzheimer’s will develop it before the age of 65, according to the association.

Alzheimer's is the most common form of dementia, a general term for memory loss and other intellectual abilities serious enough to interfere with daily life. Alzheimer's disease accounts for 60 to 80 percent of dementia cases. According to Alzheimer’s Association’s 2016 Alzheimer’s Disease Facts and Figures, of the estimated 5.4 million Americans with Alzheimer's, 5.2 million people are age 65 and older, and approximately 200,000 individuals under age 65 have younger-onset Alzheimer's.

Reimer has a rare gene called PSEN 1, which means each of his five children have a 50 percent chance of developing the disease.

In New Hampshire, the disease is expected to impact more and more residents.

Documents from the New Hampshire chapter of Alzheimer’s Association show a total of 23,000 Granite State residents have Alzheimer's. In 2020, that number will increase to 26,000, and by 2025, 32,000 people in the state will have Alzheimer’s. In 2013, 351 people in the state died from Alzheimer’s, making it the sixth leading cause of death in New Hampshire.

Nick Reimer, 28, the oldest of the Reimer children, tries not to get his hopes up when he hears about new developments, or follow them too closely. “I don’t want my hopes to get crushed,” he said. “If something works, let me know.”

Nick’s feelings are similar to those of the rest of his siblings, who do not wish to get tested for the PSEN 1 gene. He feels knowing would change his life, but not for the better.

“I wouldn’t want to live my life differently,” he said. “I might not do some of the things I want to do, like pursuing a college degree or my martial arts career, because it would be like, 'What’s the point?’”

Erika Reimer, 27, Nick’s sister, said she also is not interested in getting tested unless a cure is found. She said her father has continued to deteriorate, and struggles to comprehend full sentences. Nick said his father still recognizes his children and his brothers and sister, but fears the day when he comes home when his father doesn’t recognize him. He visits his family weekly.

Still, he admits there’s a certain relief in not having to see his father on a day-to-day basis, although he worries about how it affects his mother.

“Being with my father is like taking care of a large child,” he said. “He can’t process full sentences and he doesn’t know where he wants to go and what he wants to do. You have to make choices for him ... Wondering about how my mom is doing is a big concern, because you kind of feel helpless and want to make it better, but you can’t.”

To combat the sense of helplessness, the two siblings have started competing in triathlons to raise money for Alzheimer’s research. Erika said the two, along with some of their friends and Nick’s fiancée, will be competing in the Buzzard’s Bay Sprint Triathlon on Sept. 18. The race will entail a third of a mile swim, 14-mile bike ride, and a 3-mile run. Their group, "Kick Alzheimer’s in the Tangles," has raised $1,610 of its $2,000 fundraising goal, and can be viewed on Buzzard Bay's triathlon website.

Erika said her paternal grandfather died of Alzheimer’s in 1992, when her grandmother was 65. Her grandmother died this spring, and Erika is motivated to fundraise after seeing how living without her husband affected her grandmother, in addition to watching her father deteriorate. She encourages people who want the help to also participate in physical fundraisers if they are able.

“It takes so much physical energy, I know someone who competes is committed to the cause,” she said. Another way to help, Erika said, is to listen to people affected by the disease. “Don’t say you hope someone gets better, because they’re not going to."

Deb Anthony, executive director of Seacoast Family Food Pantry in Portsmouth, understands the Reimer siblings' concerns about testing to determine the chances they may get Alzheimer's.

At 59, Anthony’s participating in a year-long Alzheimer’s study at ActivMed, a clinical research practice at Pease International Tradeport. She sought the trial out to help provide research that could be useful for her children and grandchildren. She hasn’t been diagnosed, but later-onset Alzheimer’s has plagued both her mother and her father’s family.

The trial is testing for different genetic markers that could indicate if someone is developing Alzheimer’s, Anthony said. The trial will include a brain scan and spinal tap, which will show if she has an increased risk of developing the disease.

Researchers have not found a specific gene that directly causes the late-onset form of Alzheimer’s, according to the National Institute on Aging. However, having one form of the apolipoprotein E gene on chromosome 19 increases one’s risk. The gene can come in several forms, but only APOE ε4 increases a person’s risk.

Anthony said her father died of the disease, and she remembers him having a series of strokes as the dementia increased. For her, knowing in advance will help get her affairs in order.

Anthony wants to be able to give her children permission to eventually stop taking care of her if her health deteriorated.

“It’s about preparation,” she said, noting her father lived in a nursing home toward the end of his life and she now takes care of her 89-year-old mother, who also has Alzheimer’s.

“If I find out that’s definitely where I’m at, I’ll be able to prepare for the future differently," Anthony continued. "And maybe someday it will help find a cure for my children, if they’re at risk. I think that’s a better gift than leaving them a house.”