Members of Alaska’s nine teams participating in the Alzheimer Associations’ 2016 The Longest Day Fundraiser will some have more time — 19 hours of daylight on the summer solstice — than their Lower 48 counterparts to raise awareness and funds for the nation’s most expensive disease, the only known disease without a cure or treatment to slow progression.
Last year nearly 6,400 people were diagnosed statewide, and $56 million were spent in Medicaid costs. One-third of Alaska’s 33,000 caregivers, who put in 38 million hours of unpaid service in 2015, will eat less or go hungry because of the consequential financial burden.
“It is going to bankrupt our government,” said Cindy Harris, Alaska’s ambassador for the Alzheimer’s Association, and leader for Mama Lena, a central Kenai Peninsula Longest Day team.
Without more pre-emptive, targeted support through funding and policy changes, the federal government will likely pay nearly $1.1 trillion in Medicare and Medicaid payments by 2050 when the number of diagnoses nationwide is projected to reach 13.8 million, according to the Alzheimer’s Association.
Part of the problem is that the disease does not discriminate, Harris said. While older people are more likely to have a form of dementia, including Alzheimer’s, people in their early 30s have been diagnosed, she said.
Karen Burger, whose team is hosting The Longest Day and Summer Solstice Kick Off Scramble Golf Tournament from 6 p.m. to midnight on June 18 at the Bird Homestead golf course, said she saw firsthand the toll the disease can take on a family. Her paternal grandparents and both of her husband’s grandmothers were all diagnosed with early-onset Alzheimer’s before they died.
“Personally, it is just very sad,” Burger said. “Once you realize what they have, you have to adjust your thinking and your talking, because you don’t want to say ‘I already told you this.’”
Burger’s father regularly met her grandfather to play cards while her grandfather’s disease progressed, she recalls. Her father, who was receiving treatment for cancer at the time, eventually had to pause the games when Burger’s grandfather became upset every time he had to be retold about his son’s illness.
It is also heartwrenching to take away activities like driving from those who were once highly independent people, like her grandmother, Burger said.
“I don’t understand enough of it,” she said. “Personally, it scares me to death to get it.”
Burger said she is worried about developing the disease.
“I don’t want to be a burden,” she said. “People don’t realize how burdensome it is. Once they (a family member) become full-blown Alzheimer’s, it is 24-hour care. It is very expensive. Families hurt from it monetarily and physically.”
On average, caregivers or those contributing to the care of someone with Alzheimer’s will pay $15,000 annually of their own income to provide support, according to the Alzheimer’s Association. One in five caregivers will take fewer visits to the doctors themselves to offset the expense of providing care, and 74 percent of caregivers are worried about being able to maintain their own health.
Burger and Harris both said the Kenai Peninsula is in need of more professionals trained in palliative care for people with Alzheimer’s. Many caregivers need more education, the knowledge to properly provide care for their friends and family who have the disease, Burger said.
For fundraisers like The Longest Day, every dollar counts, said Kelsey Cusack, who is hosting a class at 4 p.m. June 19 at YogaSol Alaska. Admission is a $10 suggested donation. All of the donations received will go toward the fundraiser, she said.
Last year Harris set a goal to raise $5,000 and made $7,800 for The Longest Day. This year the goal is $10,000, she said.
During her first trip to Washington, D.C. as the Alzheimer’s Association’s ambassador in April, Harris advocated for the Palliative Care and Hospice Education and Training Act, or PCHETA, which would help set up programs that would help support a more robust workforce of nurses and doctors who can better train and assist primary caregivers.
While there is still much to address through research, care giving and treatments, significant progress has already been made to combat dementia and other diseases under the dementia umbrella.
Congress passed the HOPE for Alzheimer’s Act and approved $400 million dollars in research at the National Institutes of Health this year. Both still await President Barack Obama’s signature, Harris said.
“We did it, we did it!” she said.
She will host a Kick-Off Party for the event from 10 a.m. to 6 p.m. at Soldotna Creek Park complete with live music, hotdogs and face painting among other activities to honor her mother Lena Berta, who had Alzheimer’s.
Harris organized the first Longest Day event in Alaska in 2015, and said she hopes more teams will continue to join each year.
Reach Kelly Sullivan at kelly.sullivan@peninsulaclarion.com.
