Boomers Caring For Parents And Spouses Afflicted With Alzheimer's

Armen Hareyan's picture

Alzheimer's disease currently afflicts more than 5 million Americans and 70 percent of them live at home, where they are cared for by millions of daughters, sons and spouses.

Caregivers can be younger or older, but demographic reality means that the weight of work is falling largely on those born between 1946 and 1964, Newsweek reports in the current issue. As they watch their parents' inevitable decline, boomers can't help but see a disturbing glimpse of their own potential future.

In the June 18 Newsweek cover "Caregiving & Alzheimer's" (on newsstands Monday, June 11), Senior Editor Barbara Kantrowitz and Chicago Correspondent Karen Springen report on the new challenges facing boomers now that many of their parents are living well past 80, the age when the incidence of all types of dementia rises sharply. It is estimated that by 2050, the number of Americans living with Alzheimer's and other dementias could soar to 16 million. This figure is particularly alarming for those who find themselves looking after spouses. Early-onset cases are not as common as the dementia that appears in old age, but the Alzheimer's Association estimates that approximately 500,000 Americans under 65 fall into this category.

That grim prospect of impending dementia has turned many caregivers into activists urgently pushing for research funds. "It's a coming crisis in health care," says Harry Johns, president and CEO of the Alzheimer's Association, whose own mother had Alzheimer's and died in April. The human cost is crushing, says Johns: "It's emotionally, physically and financially draining."


Many caregivers are fighting the disease through political activism. Entrepreneur John Osher, 60, decided to make Alzheimer's his crusade after his 87-year-old father, Daniel, a neurosurgeon, died of the disease in 2003. Osher began working with the Alzheimer's Association, hunting major donors. Funding research now makes economic sense, Osher says. "It's the most expensive disease" for families, he tells Newsweek. "It's so many years, and there's so much care involved. The fact that it's going to cost us so much down the road is one of the biggest reasons we need more funding." It is estimated that by 2030, Alzheimer's will cost Medicare $400 billion, almost as much as the entire current Medicare budget.

Julie Baeza, 48, of Sterling, Ill., helps her father, Otto Null, 75, care for her mother, Margaret, 69, who has Alzheimer's. She worries that she, too, may someday suffer her mother's fate. "That's part of why I decided to start contacting our legislators," she says. Baeza is trying to get support for two bills making their way through Congress: the Alzheimer's Breakthrough Act of 2007 and the Alzheimer's Family Assistance Act of 2007. The first bill would double funding for Alzheimer's research at the National Institutes of Health to $1.3 billion from the current $642.7 million. The Family Assistance Act would provide tax credits for caregivers. "This legislation is so important," she says. "It's so expensive to the caregivers to keep these families at home." Home health aides can cost more than $20 an hour, and that's on top of special equipment like wheelchairs or adjustable beds.

Also in the cover package:

-- Contributing Editor Jane Bryant Quinn explores the different long-term- care options available and the ways insurers are now targeting boomers who might be willing to buy new designer forms of TLC coverage.

-- Correspondent Joan Raymond reports that the best way to handle the difficult task of being a caregiver to an ailing parent is to make preparations in advance. Experts recommend preparing two vital legal documents; the first is a health-care proxy, also called a health-care power of attorney. This document appoints a specific person to make all decisions regarding health care and end-of-life care, including refusal of treatment. The second is an advance directive, or a living will. This allows the person to state what kind of medical care they want and which life-support procedures they do not want.

-- Raymond also provides some ideas on how to start a meaningful dialogue with a parent about aging. Uncomfortable as the topic can be, it is crucial in understanding a parents' personal values and learning about what they would do if faced with a situation in which people they loved could no longer care for themselves.