Familial Alzheimer’s disease

Sisters Eva Thompson and Leah Huxtable

It was 2010, and the Thompson family gathered around for Christmas breakfast. The four adult siblings were scattered throughout the Twin Cities – their busy grown-up lives often preventing big family get-togethers. Amidst the celebration and laughter, the crew noticed a pattern to Mom’s latest quirks, “She didn’t show up to babysit for you, too?”

You can say that Alzheimer’s is prevalent in my family,” says Leah Huxtable, the oldest daughter. In addition to their mother Lucy, the family has also lost a grandmother and a great uncle to the disease. More in Lucy’s generation are diagnosed. “Every time one of us puts eggs in the pantry instead of the refrigerator, we think, ‘This is it.'”

The kids staged an intervention that Lucy promptly usurped. “Are you here to talk about my brain?” she asked. Then-pregnant second daughter Eva Thompson and her husband moved in with her to do some pre-diagnosis determinations.

At the age of 60, Lucy was diagnosed with Early-Onset Familial Alzheimer’s Disease (eFAD). A genetic test did not match Lucy to one of the known genetic mutations, but researchers don’t know how many unknown markers exist. Children with a parent who carries one of the disease mutations have a 50 percent chance of inheriting and developing eFAD, according to alzforum.org.

Later, Lucy moved in with Leah, her husband and their growing family.

Leah had no idea what she was getting into or how fast Lucy would decline. But Lucy knew. Having cared for her own mother and witnessed progression of the disease firsthand, Lucy was hyper-aware of the chaotic future that would end with her death. “In this case, ignorance would be bliss,” Lucy would say. Not interested in prolonging the inevitable, Lucy installed a strict health-care directive that prevented doctors from prescribing even antibiotics, and no one could lift a spoon to help her eat.

The family struggled as Lucy’s adult children juggled their own lives with the burdens of caring for a mother whose physical and emotional demands were growing. “I was sandwiched between a screaming toddler and a deteriorating parent,” says Leah, mother of four. “What was I going to do? She was my best friend.”

Caregiving realities

Statistics from the Alzheimer’s Association show that the burden of caring for those with the disease typically falls to daughters who are subsequently at increased risk for depression and impaired health. “Caring for someone can be so destructive,” says Leah. “The marital strife. It all imparts to the kids.” For a time, Lucy relived the emotional throes of her long-ago divorce. Any hard-won resolutions were soon forgotten, and the family would once again be consumed by the past.

“Then she started escaping,” says Leah. Panicked, Leah called the police – again and again. After the time Lucy was found two miles away in the middle of a traffic roundabout, the family moved her into an assisted care facility. But Lucy’s wanderings continued, and she constantly pleaded with everyone to let her come home. Heartbroken, the family agreed to sedation.

A semblance of peace was found when Lucy’s ex-husband, the children’s father, decided to have Lucy come live with him. To Lucy, who could no longer recall the divorce, she was simply going home with her husband. Two months later, Lucy went to sleep and didn’t wake up.

Advocating for a cure

“It’s been 20 years since my grandmother died,” says Eva. “And nothing has changed. Alzheimer’s is the only leading killer with no prevention, treatment or cure.” Perhaps Lucy’s activism rubbed off on the two sisters, who set out to change their family’s future. “We started fundraising for research,” says Leah.

The family has raised nearly $120,000 and counting in private donations for the Alzheimer’s Association’s MN-ND Chapter’s annual Twin Cities Walk to End Alzheimer’s. However, scientific breakthroughs require big money, so the sisters also fundraised their way to Washington, D.C., where they’re intent on securing a $414 million federal increase for the 2018 budget.

Then, there is the Dominantly Inherited Alzheimer Network (DIAN) Observational Study, an international research partnership of leading scientists working to bring treatments to market and identify and understand genetic markers in adult biological children of a parent with Alzheimer’s. It is these types of familial studies that led to the discovery of Alzheimer’s, and researchers believe they hold the keys to preventions and treatments that will translate into the more common late-onset Alzheimer’s population.

However, the Thompson family still wrestles with whether they want to give their lives and bodies over to the invasiveness of science, and in whether they want to know their family’s future – who has Alzheimer’s and who will be the caretakers?

In Leah’s head, she knows it’s probably too late for her. Yet her heart still pushes forward in hopes of saving her children’s generation from having to care for their mothers, aunts and uncles as they are diagnosed one by one. “I just want to get ahead of this thing before it takes over our lives again,” says Leah. “And I just really, really don’t want to have it.”

According to the 2016 Alzheimer’s Disease Facts and Figures report:
• Almost 2/3 of Americans with Alzheimer’s are women. Of the 5.2 million people age 65 and older with Alzheimer’s in the United States, 3.3 million are women and 1.9 million are men. This discrepancy may be due to the fact that women live longer than men on average, and older age is the greatest risk factor for Alzheimer’s.
• Approximately 2/3 of caregivers are women. More specifically, over 1/3 of dementia caregivers are daughters.
• Caregivers who are women may experience slightly higher levels of burden, depression and impaired health than men, with evidence suggesting these differences arise because female caregivers tend to spend more time caregiving and take on more caregiving tasks.

Sept. 9, 2017: Twin Cities Walk to End Alzheimer’s at Target Field, Mpls. Chaired by Eva Thompson, it is the 3rd largest Walk in the U.S.

FFI: Alzheimer’s Association Minnesota-North Dakota