Housing Wishes of Elderly Often Ignored

Millions of older Americans have been shuffled off to adult day care and assisted living facilities at the wishes of their children, their doctors, or their insurance companies.

But in too many cases, no one bothered to ask the elders what they wanted, according to a new Brandeis University study.

Even older people with full mental capacities aren’t being consulted often enough, said John Capitman, a professor at Brandeis’ Institute for Health Policy.

“Mom is still an adult, and an adult with a whole life of experience,” he said.

The adult children who are sending their parents to long-term care programs “wouldn’t want somebody else to tell them, ‘No, you can’t live at home.’ ”

With funding from the federal Department of Health and Human Services’ Administration on Aging, Capitman spent four years interviewing more than 1,000 elderly people around the country, as well as their relatives. His staff also interviewed doctors and facility administrators.

His research focused primarily on adult day care centers--where seniors are sent for several hours each day--and assisted living facilities, which are similar to nursing homes but offer less intensive nursing care.

In his interviews, Capitman heard a familiar refrain.

“When we visited people in assisted living, consistently they said: ‘My child made the decision. I didn’t choose to be here,”’ he said Jan. 11.

Most seniors seemed to have adjusted to their new circumstances. But then there were people he interviewed like the 80-something woman in New Haven, Conn., whose family had placed her in assisted living against her wishes.

“I don’t know what terrible sin I must have done that I’m still alive and living like this,” she told Capitman.

By ignoring their parents’ wishes, adult children are placing seniors in programs that often don’t meet their needs, the researcher said.

“There’s a lot of potential for an older person’s expression of their own needs to get lost in the shuffle,” said Jane Tilly, associate director for long-term care policy research at the American Assn. of Retired Persons’ Public Policy Institute, which did not participate in the study.

Nationwide, some 6.5 million people over age 65 have disabilities and are receiving care ranging from home health services to 24-hour nursing home assistance.

The health care system contributes to the problem by refusing to pay for lengthy hospital stays, forcing many elders to move to nursing homes or other facilities when they’d rather return to their own houses or apartments, he said.

President Clinton has recently proposed tax breaks and other steps to ease the financial strain on families caring for chronically ill or disabled relatives.

Americans, Capitman said, need to do a better job of preparing elders to make difficult living decisions. And their children, he said, need to pay closer attention to what aging parents really want.

But the AARP’s Tilly warned that too often, caregivers--including adult children and elderly spouses--try to keep a disabled relative at home, placing too heavy a burden on family members.

The problem is only going to continue.

The 65-to-74 year-old set is expected to nearly double, from 18 million Americans in 2000 to 35 million in 2050, according to census projections. The population between ages 75 and 84 will likely more than double, from 12 million in 2000 to 26 million in 2050.