NEW YORK, Feb ,99– A study of Alzheimer caregivers released Friday “confirms that in the United States, families are the backbone of the long-term care system and provide care at enormous personal cost — to their physical and mental health, to their other family and job responsibilities and to their own financial security.”

The report notes that one in every three of the baby boomer generation is at risk for Alzheimer’s disease. Thus the number of people caring for relatives with the neurodegenerative disease will grow over the next 50 years as the boomers age.

Judy Riggs, director of state and federal policy for the Alzheimer Association said that “Alzheimer caregivers need help from the healthcare system, from the community, and from policy makers.”

Researchers with the National Alliance for Caregiving interviewed more than 1,500 caregivers. Of that group, 22% were caring for patients with Alzheimer’s or “mental confusion.”

Caregivers reported high levels of physical strain and emotional distress. Compared with other caregivers in the survey, Alzheimer caregivers were more likely to provide more than 40 hours of care a week. Nearly 75% had been providing care for more than a year, and almost 40% had been doing so for more than 5 years. Alzheimer caregivers were also more likely than others to deal with incontinence and medication problems.

Nearly 75% of Alzheimer caregivers are women. One-third are also caring for children or grandchildren in the home.

Seventy percent of the Alzheimer caregivers surveyed were employed. A high percentage of them reported missed work days, turning down promotions, having to cut back to part-time work, or having to quit work altogether due to their caregiving role.

One fifth of caregivers have an annual income below $15,000, and only 11% have an income greater than $75,000. Caregivers spend an average of $260 per month of their own income on patient needs.

Caregivers said in the survey that what they needed most was “extra money to help pay for things.”

Alzheimer Association members, the National Alliance for Caregiving and Rep. Nancy Johnson (R-CT) joined in Washington, DC, to call for the healthcare system to “recognize and support caregivers as essential members of the healthcare team.” Caregivers should be entitled to preventive healthcare and Medicare and other insurers “must provide adequate reimbursement for these essential services.”