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Structure, hope can aid sufferers of early-onset dementia

September 24, 2013 Updated: October 8, 2013 at 9:16 pm
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Susan Grant and Ciny Dilks stands for a portrait at their home in Black Forest, Colorado on Friday, September 20, 2013. (Kent Nishimura/The Gazette)

At age 53, Susan Grant was at the peak of her career as a financial planner, overseeing $40 million in investment portfolios.

Then, for the first time in her life, she started suffering bouts of bronchitis and pneumonia. She also began to notice other changes. Memories that were once fundamental and innate, such as knowing whether to head north or south on the interstate to get home, no longer could be accessed reliably.

"She would call me at work and ask, 'How do I get to the hairdresser?'" said Cindy Dilks, 58, Grant's partner of 28 years.

Because of the industry in which she worked, Grant had made the right investments and purchased long-term care insurance. In 2003, she took medical retirement and, after a series of misdiagnoses that included stress, menopause and Parkinson's, finally was diagnosed with frontotemporal dementia.

Frontotemporal dementia, or FTD, refers to a group of degenerative disorders affecting the brain's frontal and temporal lobes, which control planning and judgment, emotions, speech and language comprehension. The disease falls under the rubric of Alzheimer's and most often manifests in adults in their 50s through early 60s. Initial signs include cognitive losses, a compromised immune system and greater susceptibility to infections, especially in the lungs.

Once considered rare, FTD now is thought to be responsible for up to 15 percent of all dementia diagnoses and as many as half of the cases in people younger than 65.

Doctors told Grant she could expect to live two more years. She and Dilks bought a small RV and traveled the nation, visiting specialists and volunteering for clinical trials along the way.

"We decided we were going to do everything we can, see everything we can and eat everything we wanted to eat because she was going to die," Dilks said.

But Grant didn't die. A decade later, she and Dilks are co-founders of Planning for Hope, a nonprofit FTD education and advocacy organization. Grant, now 62, recently was singled out as an influential agent of change in PharmaVOICE, a professional publication, in an issue devoted to 100 of the industry's more inspiring people.

Unlike with Alzheimer's, which traditionally progresses in a gradual erosion of cognitive ability, the losses with FTD occur in steps, Grant said.

"Every eight months, I find a new thing I can't do," she said. "I can't spell now, and you can't use spell check if you don't know what a word starts with."

Still, Grant spends a chunk of each day online, corresponding with other FTD patients as well as the movers and shakers in the field of dementia research. They all want to know why she's alive.

A report in the New England Journal of Medicine estimates the annual expense of caring for Americans with dementia to be at least $159 billion, more costly than heart disease or cancer.

By 2050, those costs are expected to soar to $1.2 trillion. Yet, the 2013 World Alzheimer's Report found that funding for Alzheimer's research is one-tenth of that invested in studies for other major diseases.

A recent, major salvo in the fight against dementia came in the form of a $45 million grant from the National Institutes of Health for research into new drugs and therapies, part of a stepped-up initiative to find innovative treatments for degenerative brain diseases. Like Alzheimer's, which affects as many as 5 million Americans, at present FTD cannot be cured or prevented. Current drug therapy for dementia focuses on improving quality of life by ameliorating symptoms, including memory loss and severe anxiety, but the medicines don't work for everyone.

The time involved in finding the right combination of medications can be physically and emotionally exhaustive. For many, it's out of reach financially. Grant's health insurance is rare in that it covers the cost of experimental medicines.

"Susan is on medications that people with no money for medications couldn't afford," said Dilks, who in 2003 quit her job to serve as Grant's full-time caregiver, a role for which she is paid by Grant's insurance. "People can live with these diseases if the right safety nets are in place. Unfortunately, many people don't have these in place."

Knowing your family history, recognizing symptoms and then seeking an early diagnosis can be critical to creating a structure that will allow for better quality of life. The lead time it affords can help a newly diagnosed patient put measures in place before symptoms worsen, and thus avoid traumatic events such as foreclosure or termination from work.

"That gives people extra time to get their lives in order. A lot of people do know what's going on with their brains, but they're embarrassed to admit it or seek a diagnosis," Dilks said.

In the years after her diagnosis, while actively seeking the right combination of medications and supplements, Grant also adopted a healthy diet and exercise habits, and did what she could to stay mentally stimulated and eliminate stress.

Finding medications that effectively battled the disorder's more pernicious early symptoms - anxiety and depression - was key for Grant as she waits for the next piece of identity to slip away.

"I believe this is one of the hardest parts of a degenerative disease. Grieving goes on and on. You deal with one loss and the next one rears its ugly head," wrote Grant in a personal essay in the July/September 2005 issue of Alzheimer's Care Quarterly.

Dilks believes that Grant's commitment to Planning for Hope helps maintain her health.

"People who are more highly educated, who keep working on their brains, tend to live longer. That's just our gut feeling, based on Susan's experience," Dilks said.

Social and intellectual stimulation can be a boon for dementia sufferers, even if it's only demonstrable effect is to lift the spirits, said Barb Caudle, regional director of the Southern Colorado Alzheimer's Association.

"Just being connected to other people, even if it's a simple activity, has been shown to be beneficial to people with dementia," said Caudle, whose organization hosts "Cafe Connect" socials each quarter. "Our main intent is to try to help life feel a little bit normal for these people."

For Grant, no longer able to multi-task, her work as an advocate with Planning for Hope takes a linear path these days, one small duty at a time. Her learning curve is longer now, but her education continues. She believes it's one of the fundamental things keeping her alive.

"I'm learning about Alzheimer's now, because I know everything about FTD," she said.

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