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Published October 20, 2013, 09:00 PM

Uncertain path: Early onset means additional challenges for Alzheimer’s patients and their caregivers

FARGO – Two years ago, Lonna Whiting’s sister-in-law called to tell her, “We need to get your mom’s brain checked out.” At the time, Whiting’s mother, Beth Gregory, was 59 years old and running a day care business out of her home.

By: Meredith Holt, INFORUM

FARGO – Two years ago, Lonna Whiting’s sister-in-law called to tell her, “We need to get your mom’s brain checked out.”

At the time, Whiting’s mother, Beth Gregory, was 59 years old and running a day care business out of her home.

She was having a noticeably harder time keeping track of the finances for what the kids called “Bethy’s House.”

Whiting, 34, of Fargo, saw a change in her mom, too, but she hoped it was a downswing in her depression, not an early sign of dementia or Alzheimer’s.

In 2010, 18,000 North Dakotans had Alzheimer’s or another dementia, 94,000 in Minnesota, according to the Alzheimer’s Association. Gretchen Dobervich, North Dakota field director for the association’s Minnesota-North Dakota chapter, estimates that about 10 percent are young-onset, meaning diagnosed before age 65.

Those numbers are expected to increase as the population lives longer.

“This is what everyone will have to deal with eventually, whether you’re 34 or 54 or 64,” Whiting says.

‘A Bethy’s reunion’

In the two years since that call, Gregory’s symptoms were erratic. She’d be OK for a while, then she’d have an incident, like when she couldn’t set her new alarm clock or match the baby bottles to their tops.

Dobervich says getting an early-onset diagnosis is one of the biggest challenges. It took two years, a PET scan, an MRI, a spinal tap and blood tests before Gregory got hers.

“They basically said everything looks normal but the PET scan shows a lot of brainwaves that are dead, which means that it’s a dementia, but they don’t really know what kind,” Whiting says.

Dobervich says dementia isn’t always on health care providers’ radar with patients in their 50s or early 60s, and it can be mistaken for depression, stress, lack of sleep or poor diet.

“Stress is kind of a big one because we know that our memory is not as great and our ability to perform functions goes down when we’re under a tremendous amount of stress,” she says.

Whiting says there’s a lot of denial in early-onset cases because the families are so young, especially when there’s no family history of the disease.

Her partner, 45-year-old Kevin Carollo, agrees.

“I think the whole medical establishment is of that opinion, too. The neurologist who saw (Gregory) in 2012 was pretty astonished that she had declined so significantly over the year,” he says.

Maintaining employment is another big challenge for younger dementia or Alzheimer’s patients, Dobervich says.

In her years of service, she’s seen people who’ve lost their jobs for poor job performance or violating policies at work because they didn’t remember their first or second warnings.

In May, Gregory retired after spending 37 years as a day care provider in her Lewis & Clark neighborhood.

Former day care kid and family friend Lauren Hedman, 24, calls Gregory a local celebrity.

“She’s touched so many lives. She’s raised other people’s children,” the Fargo woman says.

At least 50-60 people showed up for her retirement party in September.

“It was so much fun to see this house filled again,” Hedman says. “It was like a school reunion, but it was a Bethy’s reunion.”

Now the girl who learned how to write her name and tie her shoes under Gregory’s care is helping her “second mom,” visiting, going on walks and cooking.

“It comes naturally. When it’s someone you love this much, you don’t have to think about it,” Hedman says.

Whiting is thankful for having people like Carollo and Hedman to rely on when it comes to her mom’s care.

“We’re concerned all day,” Carollo says. “It can’t be done with just family.”

The physical, emotional and financial tolls of caregiving for an Alzheimer’s patient can be heavy.

Last year, according to the Alzheimer’s Association, 15.4 million family members and friends provided 17.5 billion hours of unpaid care to those with Alzheimer’s and other dementias.

And the younger it starts, the bigger the potential impact.

Whiting and Carollo both work full time, and in addition to managing her mom’s care, Whiting’s become an activist for Alzheimer’s in the area, which has given her an outlet.

“At the end of the day, as strong as my mom is, I feel like it’s also making me a better person,” she says.

Whiting spent the summer trying to get her mom on disability and Medicaid to pay for her expenses.

“I have been carrying around all of my mom’s paperwork since May because I don’t know when a social worker or somebody’s going to call me needing more information,” she says.

‘A matter of coping’

The Alzheimer’s Association says it’s the only top-10 cause of death in the U.S. with no way to prevent it, cure it or slow its progression.

“You won’t survive,” Whiting says. “It’s not a matter of surviving; it’s a matter of coping with an increasingly limited amount of skills and understanding of the world around you.”

The progression of early-onset Alzheimer’s is similar to that of later-onset – it varies greatly case by case, Dobervich says.

“You could be home on your own for years, or you might need more help in a month,” Whiting says.

She says they’re doing the best they can with the information they have, but they don’t know what the future holds.

“We hope that Mom will be as good as she is as long as possible, but unfortunately, with this disease, you just don’t know how it’s going to go,” she says.

Meanwhile, Whiting and her support system try to enjoy the time they have with their mom and second mom.

“Honestly, I wouldn’t change it,” she says. “I wouldn’t ask for a healthy mom; I wouldn’t ask for a different mom, ever, and I know my brother feels the same way.”

Warning signs

The Alzheimer’s Association has compiled a list of 10 warning signs of the disease. For more information, go to www.alz.org/10signs.

1. Memory loss that disrupts daily life.

2. Challenges in planning or solving problems.

3. Difficulty completing familiar tasks at home, at work or at leisure.

4. Confusion with time or place.

5. Trouble understanding visual images and spatial relationships.

6. New problems with words in speaking or writing.

7. Misplacing things and losing the ability to retrace steps.

8. Decreased or poor judgment.

9. Withdrawal from work or social activities.

10. Changes in mood and personality.

Source: Alzheimer’s Association

Local resources

• For general information, call (800) 272-3900 (24 hours a day, seven days a week), go to www.alz.org/mnnd or email the Alzheimer’s Association Minnesota-North Dakota chapter at mnnd-info@alz.org.

• A support group for caregivers of people with young-onset Alzheimer’s meets from 6:30 to 8 p.m. the second Tuesday of the month at the Alzheimer’s Association office at 2631 12th Ave. S., Suite C, in Fargo.

• The FM Memory MeetUp will hold its first meeting, a museum tour followed by lunch, on Saturday in Fargo.

The group is open to anyone in the early stage of Alzheimer’s disease or a related dementia and their spouse, partner, adult child or friend.

For more information, go to www.meetup.com/FM-Area-Memory-MeetUp.

Readers can reach Forum reporter Meredith Holt at (701) 241-5590