Financial burden of Alzheimer's disease is hitting home

SALT LAKE CITY — Marvelle Whatcott was in charge of getting the mail every day and some days, she checked the mailbox multiple times to see if it had arrived.

"It was her thing. It was something that made her feel important," said Kevin Whatcott, Marvelle's son and caregiver up until the day she died at age 80 in 2009. He said that his mother, who had been diagnosed with Alzheimer's disease, was always looking for something to do, for a reason to belong.

"She would just sit on the couch in the dark if we let her," he said. "But it wouldn't make her happy."

The diagnosis was tricky for family members at first, even emotionally and physically taxing at times. But Whatcott said that after learning the proper way to respond to their mother's sometimes repetitive requests, the extended family became more devoted.

"Once everybody got it, it drew us closer," he said.

After seeing a need for better caregiving resources in the state, Whatcott, a former attorney, started Homewatch CareGivers of Utah. He said he's learned a lot over the years, going into people's homes to help those in need.

The idea of personal care, "of being there when no one else can be, when the family or a spouse can't deal with it anymore," he said, has helped people stay in their own homes longer, often avoiding the expenses of nursing home care.

While the reasons behind the costs of health care are complicated, much of what is being spent on Alzheimer's is going toward hospitalizations and institutional care, according to the Alzheimer's Association.

As the population continues to age, live longer and stay living in the state of Utah, the number of those facing the life-changing effects of the disease will increase dramatically, Dr. Norman Foster, director of the Center for Alzheimer's Care, Imaging and Research and a professor of neurology at the University of Utah said Thursday.

He and others spoke publicly during a special forum on Alzheimer's at the Hinckley Institute of Politics.

"It affects not just patients, it's not just a medical problem, but it also involves families and has an impact on neighbors, on children, as well as spouses and other family members," he said. While an Alzheimer's diagnosis carries an intense psychological burden for families of patients, Foster said it also has a huge financial impact on families.

Nationally, expenses are reaching $200 billion annually, with $140 billion of that coming from taxpayer-funded Medicare and Medicaid.

It is estimated that families in the Beehive State provide almost 80 percent of the care for the more than 32,000 Utahns living with the disease. The approximate 132,000 caregivers provide more than 150 million hours of care at home, care that is worth $1.8 billion annually. But such contributions are also crippling families and straining finances.

Because of the projected rise in people being diagnosed, the Alzheimer's Association and health care advocates nationwide are pushing for state-initiated plans to address the expected tsunami and its accompanying costs.

Utah is one of 38 states and the District of Columbia that has published or is in the process of writing a state plan. The Utah plan for Alzheimer's and related dementia diseases was adopted into statute earlier this year, following years of legislative moves to prepare for it, said Sen. Karen Morgan, D-Salt Lake City, who sponsored the original bill.

Morgan said the political and economic climate in Utah made it difficult to get lawmakers to take steps to get the plan started, but she said the public can help by increasing awareness about the disease and eliminating any stigma associated with Alzheimer's.