Springfield resident Tom Berkshire, 68, is married to a woman, 66-year-old Charlotte, who was diagnosed with dementia about five years ago. Suffering from frontotemporal dementia, Charlotte can no longer speak, has lost her ability to understand and, though now losing the ability to walk, was once at risk for wandering. Though Tom is lucky enough to have the help of a paid caregiver during the day, on evenings and weekends he’s on constant alert, trying to anticipate his wife’s needs, which she cannot articulate, and keep her out of harm’s way. “It just changes your life,” he says about dementia.
It’s situations like the Berkshires’ that researchers studied through a Centers for Disease Control (CDC) survey administered within Illinois, Ohio, Louisiana and the District of Columbia in 2009. Through the survey, researchers found that 16.1 percent of Alzheimer’s and dementia caregivers reported frequent mental distress. Only 12.7 percent of caregivers for people with other diseases including cancer, heart disease and diabetes, reported frequent mental distress. Alzheimer’s and dementia caregivers also reported stress as the greatest difficulty they face and were more likely than other caregivers to say that their efforts to take care of a loved one aggravated their own health problems. Caregivers for Alzheimer’s or dementia patients, who tend to be older than other types of caregivers, were also more likely to report that their loved one required the most help with daily needs, such as bathing, eating and dressing – which researchers say is the most intense type of care. Alzheimer’s and dementia patients also required care for longer periods of time, with 45.5 percent of Alzheimer’s and dementia caregivers providing care for between one and five years, compared to about 32 percent for other caregivers.
“This is a long-term, high intensity type of caregiving. Not that other caregivers don’t have high burdens too, but this group in particular appears to have a very high burden associated with caregiving,” says Erin DeFries Bouldin, author of a report, funded by the Alzheimer’s Association, detailing the CDC survey results. The findings were presented last week in Springfield during an Alzheimer’s Association action summit. “Our concern is that this might be taking a negative toll on the caregivers themselves.”
That concern will only grow, advocates say, as baby boomers, who began turning 65 this year, become more and more at risk for Alzheimer’s and dementia as they age. Though dementia is not a normal aspect of aging, old age is the greatest risk factor for developing dementia and Alzheimer’s, which now affects about 210,000 Illinoisans, a number that is expected to increase by 14 percent, to 240,000, by 2025.
“Based on knowing where the numbers of those affected by Alzheimer’s are going … caregiving is going to become a bigger and bigger issue for Illinoisans to deal with,” says Erna Colborn, president and CEO of the Alzheimer’s Association – Greater Illinois Chapter. In 2010, nearly 580,000 Illinoisans provided a total of 660 million hours of unpaid care to loved ones with dementia or Alzheimer’s.
While at this point advocates are mostly trying to raise awareness of the disease – which is the fifth leading cause of death for Illinoisans over the age of 65 – Colborn says sooner or later Illinois, and the nation, will have to address what she calls a growing crisis. “It’s a huge cost issue for governments, it’s a huge cost issue for families and we need those support systems that help families cope with the issues of caregiving and the duties of caregiving, but also the cost.”
She says expanding home and community based services for Alzheimer’s and dementia patients will be key to providing affordable alternatives to nursing homes, which she says don’t have enough bed space as it is.
Contact Rachel Wells at firstname.lastname@example.org.