From: deputydawg23x@gmail.com   
      
   Costs for Dementia Care Far Exceeding Other Diseases, Study Finds   
      
      
   Alicia Joseph, a home health aide with Partners in Care, helps Naomi Wallace,   
   a dementia patient. Many of the costs of caring for dementia patients are not   
   covered by Medicare.   
   SAM HODGSON FOR THE NEW YORK TIMES   
   By GINA KOLATA   
   OCTOBER 26, 2015   
   Three diseases, leading killers of Americans, often involve long periods of   
   decline before death. Two of them -- heart disease and cancer -- usually   
   require expensive drugs, surgeries and hospitalizations. The third, dementia,   
   has no effective treatments    
   to slow its course.   
      
   So when a group of researchers asked which of these diseases involved the   
   greatest health care costs in the last five years of life, the answer they   
   found might seem surprising. The most expensive, by far, was dementia.   
      
   The study looked at patients on Medicare. The average total cost of care for a   
   person with dementia over those five years was $287,038. For a patient who   
   died of heart disease it was $175,136. For a cancer patient it was $173,383.   
   Medicare paid almost    
   the same amount for patients with each of those diseases -- close to $100,000   
   -- but dementia patients had many more expenses that were not covered.   
      
   On average, the out-of-pocket cost for a patient with dementia was $61,522 --   
   more than 80 percent higher than the cost for someone with heart disease or   
   cancer. The reason is that dementia patients need caregivers to watch them,   
   help with basic    
   activities like eating, dressing and bathing, and provide constant supervision   
   to make sure they do not wander off or harm themselves. None of those costs   
   were covered by Medicare.   
      
      
   John Rakis visiting Naomi Wallace, his mother-in-law. Mr. Rakis spent more   
   than $189,000 in less than two years for caregivers and other expenses.   
   SAM HODGSON FOR THE NEW YORK TIMES   
   For many families, the cost of caring for a dementia patient often "consumed   
   almost their entire household wealth," said Dr. Amy S. Kelley, a geriatrician   
   at Icahn School of Medicine at Mt. Sinai in New York and the lead author of   
   the paper published on    
   Monday in the Annals of Internal Medicine.   
      
      
   "It's stunning that people who start out with the least end up with even   
   less," said Dr. Kenneth Covinsky, a geriatrician at the University of   
   California in San Francisco. "It's scary. And they haven't even counted some   
   of the costs, like the daughter    
   who gave up time from work and is losing part of her retirement and her   
   children's college fund."   
      
   Dr. Diane E. Meier, a professor of geriatrics and palliative care at Mount   
   Sinai Hospital, said most families are unprepared for the financial burden of   
   dementia, assuming Medicare will pick up most costs.   
      
   "What patients and their families don't realize is that they are on their   
   own," Dr. Meier said.   
      
      
   Mr. Rakis looked over notes detailing his mother-in-law's care.   
   SAM HODGSON FOR THE NEW YORK TIMES   
   Everything gets complicated when a person has dementia, noted Dr. Christine K.   
   Cassel, a geriatrician and chief executive of the National Quality Forum.   
      
   She described a familiar situation: If a dementia patient in a nursing home   
   gets a fever, the staff members say, "I can't handle it" and call 911, she   
   said. The patient lands in the hospital. There, patients with dementia tend to   
   have complications --    
   they get delirious and confused, fall out of bed and break a bone, or they   
   choke on their food. Medical costs soar.   
      
   To obtain cost estimates, Dr. Kelley and her colleagues used data from the   
   Health and Retirement Survey, a federally funded study that conducts detailed   
   interviews every two years with a nationally representative sample of older   
   people, getting an    
   average response rate of 86 percent. It collects data on participants'   
   incomes, health and needs for care. It includes data on subjects' cognitive   
   functioning and the likelihood that they are demented, and on their total   
   out-of-pocket spending.   
      
   The survey links to the Medicare database, which provides data on   
   participants' total medical costs, and to the National Death Index. After   
   people die, their families are questioned again about health care spending,   
   including spending on nursing homes    
   and home health care. To estimate the costs of unpaid care -- a daughter who   
   leaves her job to care for a mother with Alzheimer's disease, for example --   
   the researchers used $20 an hour, the average for a home health care aide.   
      
      
   Interactive Feature | Paying Till It Hurts A series of articles by the New   
   York Times correspondent Elisabeth Rosenthal examines the price of medical   
   care in the United States. In each installment, readers were invited to share   
   their perspectives on    
   managing costs and treatment.   
   The reason for the big disparities in out-of-pocket costs for the three   
   diseases, Dr. Kelley said, is that Medicare covers discrete medical services   
   like office visits and acute care such as hospitalization and surgery.   
   Expenses for cancer patients and    
   heart patients tend to be of that sort. They often do not need full-time home   
   or nursing home care until the very end of their life, if at all, so do not   
   have that continuing cost. Dementia patients, in contrast, need constant care   
   for years. They may    
   not be sick enough for a nursing home but cannot be left alone.   
      
   When they are sick enough for a nursing home, that cost is not covered by   
   health insurance. More than half of patients with dementia -- and   
   three-quarters of those from racial minorities -- spend down, using savings to   
   pay for the nursing home until    
   nothing is left. Then Medicaid, the federal-state program for low-income   
   people, takes over.   
      
   "It's a terribly expensive disease," said Virginia Benson, whose 91-year-old   
   husband, George, a psychiatrist and psychoanalyst, has Alzheimer's.   
      
      
   Dr. Benson lives in a nursing home in Webster Groves, Mo., because Mrs. Benson   
   can no longer care for him. The first home he lived in cost $6,000 a month.   
   Mrs. Benson found a less expensive one for veterans that cost $2,000 a month.   
   After a two-year wait,   
    he got in.   
      
   Dr. Benson has almost no medical expenses. "It's exclusively care costs," Mrs.   
   Benson said. "All he needs is to be washed and dressed and fed. I have often   
   felt a little guilty about putting him in care, but they said, 'It takes three   
   shifts of us to    
   take care of him.' "   
      
   Nonetheless, she added, "It breaks my heart, it just breaks my heart."   
      
      
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