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Cost of Alzheimer’s in South Carolina

By JOEY HOLLEMAN – jholleman@thestate.com

Ben and Jo Anne Gilham worked hard and saved enough for a comfortable retirement in Hilton Head. Then Ben was diagnosed with Alzheimer’s disease in 2005, and the Gilhams discovered the multifaceted horrors of a condition that’s affecting more and more people.
“Watching them slowly lose touch is so difficult,” Jo Anne Gilham said. And on top of that “the financial part brings most people to ruin.”
The estimated worldwide costs for dealing with Alzheimer’s and dementia will be $604 billion in 2010, a number that equals 1 percent of the world’s gross domestic product, according to a report released today by London-based Alzheimer’s Disease International.
If it’s hard to fathom such large numbers, consider that the annual cost of dealing with Alzheimer’s is more than the annual revenue of Wal-Mart ($414 billion). As emotionally draining as dementia is on loved ones, its impact on family finances can be nearly as overwhelming.
The Gilhams moved from Hilton Head to the Columbia area after Ben’s diagnosis so their children could help Jo Anne with in-home care. A spouse simply can’t do it all, and professional in-home caregivers, if you can find good ones, cost $15-$17 an hour. Families that opt to hire full-time help for a dementia patient in the home, where patients generally have a higher quality of life, can spend $11,000 a month. That doesn’t include all of the doctors’ bills and drug costs, which add up to hundreds, if not thousands, of dollars a month.
When Ben Gilham this summer reached the point where his family no longer could give him the care he needed in his home, they opted for a private long-term care facility. The cost for dementia units in those facilities range from $40,000-$80,000 a year. Even the healthiest retirement fund won’t last long at that rate. Those with few financial means qualify for Medicaid, but many of the long-term care facilities that accept those in the government programs struggle to provide quality care, Alzheimer’s advocates say. “South Carolina is ill-prepared for the numbers (of Alzheimer’s patients) we have right now,” Jo Anne Gilham said. “It’s not a crisis coming. It’s a crisis now. “We’re sorely lacking in training for people working with Alzheimer’s patients. It blows my mind how many people have not been trained.” There are an estimated 5.3 million people living with Alzheimer’s disease or related dementia in the United States, including about 80,000 in South Carolina. For many of their families, the only financial choice is to care for them at home. An estimated 182,000 friends and family members offer free in-home care to those with dementia in the state, according to the Alzheimer’s Association. That would be worth more than $2.3 million if those friends and family members had to be paid, according to the world report. “Family caregivers are often placed in the position of sacrificing their own health as they strive to provide an increasingly higher level of care for their loved one,” said Cindy Alewine, president of the S.C. chapter of the Alzheimer’s Association. Her organization offers respite programs, which provide short-term care so loved ones can go get a haircut or attend a dementia-care seminar, but “a long-term solution is needed,” Alewine said. The World Alzheimer Report 2010 calls for countries to develop national dementia plans, increase funding for dementia research, develop policies to help with long-term care and ensure access to cost-effective health services. The Alzheimer’s Association is pushing legislation that would create a National Alzheimer’s Project Office to plan and coordinate federal strategy on the disease. In South Carolina, a task force released a 50-page report in 2009 with 20 major recommendations on how to improve the lot of dementia sufferers and their families. Among the progress made since then has been the implementation of a toll-free line for dementia-related questions through the state Office on Aging, the establishment of a brain bank at the Medical University of South Carolina and a section of the Alzheimer’s Association Web site that lets the public know how to get involved in local dementia research projects. Much of the national focus is on promising scientific research that could slow onset of the disease, but advocates say the government can more quickly help the fast-growing Alzheimer’s crisis in the baby boom generation by changing policies on paying for in-home and long-term care. Already 5.3 million people in the country have Alzheimer’s or related dementia, and the numbers will rise as the baby boom generation ages. Jane Spangler Boone of Lexington could give the national office some suggestions. Her mother, Beulah Spangler, died last summer after suffering from dementia for years. Beulah and her husband, who died before her, worked at good jobs, so she had a small pension and Social Security. That provided just enough income to make Beulah ineligible for most government care-giving programs, but not enough to pay for long-term care. So Beulah moved in with the Boones. To get chores done outside the house, Boone put her mom in adult day care five days a month from 10 a.m.-4:30 p.m. That cost the family $350 per month. “There are no funds that can help you if you don’t qualify for Medicare,” Boone said. “My mom paid into the system for years, but she had too much income to qualify for services.” Anne Burkhalter’s mother, Doris Jean Brown, has both Alzheimer’s and diabetes, an especially dangerous combo. She would lose track of when she took insulin and forget to eat. That made it particularly difficult for the family to help with her care at home, and her retirement funds made her ineligible for professional in-home care. Brown and her husband, whom she has outlived, had to sell their home to afford proper care. Brown eventually ran out of assets and now is eligible for Medicaid. Burkhalter said one of the best pieces of advice she got was to get pre-paid funeral arrangements. “To qualify for Medicaid, you have to have less than $2,000 in assets, and that won’t cover a decent funeral,” Burkhalter said. “It’s just a very, very expensive disease, and you have so many other things to deal with.”