By Deedee Sun
The Boston University Statehouse Program
Taking care of 75-year-old Mary Osborne is a full-time, full-family affair.
"We give her a bath, do her hair, carry her because she can't walk anymore; she's incontinent," says her daughter, Bernice Osborne Pollard. "We do everything for her."
Osborne is in the late stages of Alzheimer's, a disease she has been struggling with for 10 years. She lives in a three-family Dorchester home with other family members who help with her care.
"My husband, daughter and I live on the first floor. My mother and father live on the second, and my sister lives on the third. My two brothers live less than 10 minutes away," says Osborne Pollard, who has taken no vacation time in 11 years.
According to a study published in April in the New England Journal of Medicine, more families will experience the travails of the Osborne Pollards as the number of Americans with Alzheimer's more than doubles over the next 30 years,
The study, led by the RAND Corp. and the University of Michigan, estimates that nearly 15 percent of those over 70 -- about 3.8 million people -- now have dementia. By 2040, aging baby boomers will push the number to an estimated 9.1 million.
In Massachusetts, nearly 903,000 people, or 13.8 percent of the population, are over 65. The Census Bureau estimates that within 17 years 20.1 percent of the state's population will be over 65, compared to the nation's projected aged
population of 19.7 percent.
The Rand/Michigan report estimates that by 2025, 140,000 of people over 65 in Massachusetts will have Alzheimer's if no cure is found.
The increase in numbers will push up the cost of Alzheimer's care. The study found $109 billion was spent in 2010 for Alzheimer's and related diseases, compared to $102 billion spent on heart disease and $72 billion spent on cancer care. Without any changes in care costs, the growth in the elderly population could mean a price tag of more than $300 billion a year nationally.
The authors found that nursing-home care, formal care and informal home care amount to about 84 percent of dementia costs.
"The average person with Alzheimer's usually lives eight to 10 more years, and it can be up to 20 years. So it's a long, slow, degenerative disease," said Jim Wessler, president and CEO of the Massachusetts/New Hampshire Chapter of the Alzheimer's Association. "Ultimately we need to have effective treatment for Alzheimer's."
Wessler said his association has been working with the Massachusetts Executive Office of Elderly Affairs on Alzheimer's care. The two organizations, along with a statewide Advisory Committee, released the "Massachusetts Alzheimer's Disease and Related Disorders State Plan" last year, which lists recommendations to be implemented over the next five years.
In addition to improving access to services, the plan identifies caregiver support; diagnosis, treatment and care coordination; public-health safety and awareness; and quality of care as the "five major areas of concern."
Wessler said his organization is pushing for more help from the state.
"Families make incredible sacrifices to make this work," he said. "The services they need are either not available or too expensive in the community, and they will quickly spend down their assets and impoverish themselves. ... It's not a sustainable model."
Osborne Pollard's family offers an example of what the estimated 325,000 unpaid Alzheimer's and dementia caregivers in Massachusetts go through.
"The only way my sister and I can keep our mother at home is to work part-time. So I work three days a week and she works three days, but someone is always home with Mom," Osborne Pollard said.
The family also hires a home help aide who visits nearly 40 hours per week, costing Osborne Pollard and her sister nearly $2,000 per month out-of-pocket.
"It's anywhere from $25,000 to $30,000 for the year, and there's costs we don't keep track of," Osborne Pollard said. "And if you think about what we've lost in terms of our salary from having to work part-time -- that's another financial burden."
The RAND Corp. study assessed the monetary value of informal, unpaid caregiving provided by family and friends with either the "replacement cost" or the "foregone wage" approach. Replacement cost calculates how expensive the care would have cost; the forgone wage approach calculates the income that could have been earned during the caregiving hours.
Wessler believes health care and policy officials will have to address ways to mitigate the soaring costs of Alzheimer's care, as well as ensuring that primary-care physicians have the skills to handle the rising number of dementia patients.
"One of the biggest drivers of cost right now are the issues of re-hospitalization and medical compliance," Wessler said. "Say an elderly patient has hip-replacement surgery. Four weeks later, he's back in the hospital because he slipped or wasn't following care protocol."
Alzheimer's contributes to this problem because doctor and patient can be unaware of the early signs of dementia, leaving the patients unable to take proper precautions or care for themselves.
"There's a great likelihood this patient will be rehospitalized. Their condition will either not improve, or will deteriorate," Wessler said.
Another factor that muddies cost measurement is coinciding illnesses. Patients diagnosed with dementia are more likely to have other health problems such as stroke, diabetes, arthritis, or depression. These other conditions can make it hard to figure the individual cost of dementia care.
Coinciding illnesses can also cause ambiguity in pinpointing a person's precise cause of death.
Alzheimer's is the sixth leading cause of death in the United States, killing 83,494 people in 2010, according to the Centers for Disease Control and Prevention. However, the Alzheimer's Association stresses in a 2013 report that Alzheimer's figures into more deaths because severe dementia can cause complications such as immobility and malnutrition, which increase chances of infections such as pneumonia - a common cause of death among the elderly.
While other leading causes of death have declined over the past decade, deaths from Alzheimer's have gone up 68 percent between 2000 and 2010 - a decade that saw mortality rates for heart disease decline 16 percent; fatal strokes drop 23 percent, and deaths from HIV reduced by 41 percent.
In Massachusetts, 1,773, or 27.1 percent of 2010 deaths were attributed to Alzheimer's, nearly identical to the nation's average of 27 percent according the Alzheimer's Association's report.
Wessler said that steps are being taken to make the situation easier for families like the Osborne Pollards.
"There is a bill we are promoting in Congress called the HOPE (Health Outcomes, Planning and Education) for Alzheimer's Act," he said. The bill aims to improve access to diagnosis, information, and care planning services dementia related diseases.
The Alzheimer's Association has launched specific projects such as working with Boston Medical Center and other teaching hospitals to intervene with 1,000 families over three years by proactively calling and offering assistance based on physician referrals.
"We are really trying to change the practice of medicine," he said. "I'm fully confidant we can do a much better job of supporting the family of the person with Alzheimer's disease."
Osborne Pollard hopes for improvement in the health care system, but doesn't regret her choices.
"Those are the sacrifices I made, and I would do it again," she said. "She's my mother. She took care of me, and I want to be there and take care of her too."
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