Americans are as afraid of becoming an Alzheimer caregiver as they are of getting the disease

Oct 5 2004

Americans are as afraid of becoming an Alzheimer caregiver as they are of getting the disease itself according to a new Omnibus survey of more than 1,000 adults released today by the Alzheimer’s Association.

Today the Association was joined by Senators Hillary Rodham Clinton (D-NY), Chuck Grassley (R-IA) and Kit Bond (R-MO) at a press conference in Washington, DC in urging Congress to pass the Ronald Reagan Alzheimer’s Breakthrough Act of 2004, which would provide assistance and tax relief to caregivers.

At the press conference, the Association also released a new report, Families Care: Alzheimer’s Caregiving in the United States, a report that looked at a subset of unpaid caregivers who reported helping someone aged 50 or older with Alzheimer’s or other dementia. The report was conducted in collaboration with the National Alliance for Caregiving.

"Both the report and the survey point to the tremendous need for increased support for caregivers," said Sheldon Goldberg, president and CEO of the Alzheimer’s Association. "Our report shows that Alzheimer caregivers have a disproportionately heavier burden than other caregivers, due to the number of hours spent providing care, the duration of time they give care, and the difficulty of the tasks they perform, all of which leads to an increase in unmet needs and personal sacrifice."

"As a nation, we rely on family caregivers. Although caregiving is certainly rewarding, it can also result in substantial emotional and physical strain and financial hardship, which passage of the Reagan Breakthrough Act will help alleviate," said Senator Hillary Rodham Clinton, co-chair of the Congressional Taskforce on Alzheimer’s disease and co-sponsor of the Reagan Breakthrough Act. "Congress must also pursue a comprehensive, integrated healthcare system for people with chronic diseases such as dementia to better support the caregiver."

Families Care: Alzheimer’s Caregiving in the United States reveals that compared to other caregivers, people who care for someone with Alzheimer’s conduct more difficult tasks such as bathing, feeding and dealing with incontinence. These duties are done in addition to a full-time job for more than half of the caregivers in the study and leads to the caregiver having to sacrifice "down time," including giving up time with their families and friends, exercising, and vacations. Seventy-four percent of the caregivers reported they had unmet needs of their own. The Reagan Breakthrough Act would:

• Increase federal funding for research
• Provide relief for caregivers by increasing the availability of respite care services
• Establish a $3,000 caregiver tax credit to help pay for medications, home health care, adult day care and respite care and provide an above-the-line deduction for long-term care insurance premiums
• Increase funding for the National Family Caregiver Support Program

The report also revealed that nearly half of dementia caregivers do not use any type of services to assist them with their caregiving responsibilities. Only nine percent of those surveyed used respite care, and only 11 percent participated in support groups. Forty-nine percent confessed to having spent their own money ($218/month) to help take care of the person with Alzheimer’s.

"This study shows that caregivers not only lack information and time for their own unmet needs, but they need financial support," said Senator Charles Grassley, chairman of the Senate Finance Committee. "The passage of the Reagan Breakthrough Act would establish a $3,000 caregiver tax credit to help pay for medications, home health care, adult day care and respite care, and help families prepare for their long-term care needs by providing an above-the-line deduction for premiums on long-term care insurance contracts that meet consumer protection and other standards."

Other results from the report showed that 23 percent of Alzheimer’s caregivers surveyed provide 40 or more hours of care a week and that 71 percent provide care for more than one year. Thirty-two percent provided care for more than five years. Nearly one-third of the caregivers in the report say they need help managing challenging behaviors such as wandering and giving medications.

"The Association provides a 24-hour call center, support groups, local education sessions and other services nationwide. Federal assistance is needed because, as our report shows, the need is so great. We call on Congress to pass the Reagan Breakthrough Act to provide additional relief and support to caregivers," Goldberg continued.

The Omnibus survey was conducted September 16-19, 2004, by using Opinion Research Corporation’s CARAVAN Omnibus Survey. In the survey, conducted among 1,020 Americans, 49 percent agreed with the statement, "I’m about equally as afraid of taking care of a loved one with Alzheimer’s disease as I am of getting the disease itself." Eighteen percent said they are more afraid of becoming a caregiver, while 17 percent said they were more afraid of getting the disease. Fifteen percent didn’t know or had no opinion. The margin of error for the survey is +or- 3.1 percent.