Caregiving's Heavy Toll on Family Demands a Response

Alzheimer's Association
Friday, 12 February 1999

New Study Challenges Private, Public Forces to do Their Part

A study of Alzheimer caregivers confirms that U.S. 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,"Who Cares? Families Caring For Persons with Alzheimer's Disease," is a portrait of the overwhelming task of caring for a loved one who has Alzheimer's disease — a task that at least 5 million American households carry out every day. It shows that Alzheimer caregiving is intense, hard work and carries with it heavy costs — for families and for society. The report was released by the Alzheimer's Association and the National Alliance for Caregiving.

"Alzheimer caregivers need help from the health care system, from the community and from policy makers. What they say they need most is 'extra money to help pay for things' and 'free time or a break' for themselves," said Judy Riggs, director of state and federal policy for the Alzheimer's Association.

The report on Alzheimer caregiving is based on data from a large national survey conducted by the National Alliance for Caregiving. Among the 1,509 caregivers interviewed in that survey, 22 percent were caring for a person who had Alzheimer's disease or "mental confusion." "Who Cares?" looks at this subset of caregivers, who are twice as likely as other caregivers to be providing intense day to day care.

"This new interpretation of the survey data makes the case even more forcefully for caregiver support programs," said Gail Hunt, executive director of the National Alliance for Caregiving. The survey data show that Alzheimer caregivers suffer higher levels of physical strain and emotional stress. Huge pressures are placed on their other family and work responsibilities.

It is not just the amount of time they spend but the type of care they provide that makes their caregiving so intense. Compared to other caregivers surveyed, Alzheimer caregivers are:

- Twice as likely to be providing more than 40 hours of care each week. Nearly three-fourths have been providing care for at least a year and almost 40 percent have been doing it for more than five years. They provide more help with activities of daily living and are more likely to be dealing with incontinence and with medication problems.

- Three-fourths of Alzheimer caregivers are women, and one in three has children or grandchildren under the age of 18 living at home.

- Seven in 10 are employed for at least some of the time they are caregivers. They miss time from work, cut back to part-time, turn down promotions, transfer to a less demanding job, choose early retirement or just have to quit work.

The financial strain is enormous. Alzheimer caregivers are not wealthy people — almost one in five has household income below $15,000 and only 11 percent have income of $75,000 or more, the report says, yet non-spouse caregivers who are living with and providing financial support for a person with Alzheimer's spend an average of $261 a month of their own money for prescription drugs, clothing and other daily needs.

The toll of caregiving on families can only grow worse as nearly one of every three people in America — the baby boomers — move into the age of highest risk of the disease. The 77.9 million Americans born in the baby boom years make up 29.3 percent of the nation. This aging of the population means an Alzheimer epidemic as an estimated 14 million Americans will have Alzheimer's disease by the middle of the next century, up from 4 million today.

The report seeks "to issue a wake up call to the nation — to our health care system, to communities and to policy makers." The report spells out what's needed from each:

- The health care system must recognize and support caregivers as essential members of the health care team. This includes providing preventive health care to caregivers — including counseling and respite — to reduce their own physical and mental health risks. Insurers, particularly Medicare, must provide adequate reimbursement for these essential services.

- Community organizations, including voluntary agencies, religious communities and the aging network, must adapt their services to provide the outreach and services that caregivers need.

- The federal government and the states must develop family caregiver support programs that include direct services — especially respite, adult day care and caregiver education, as well as direct financial assistance through targeted subsidies and tax credits.

Policy makers must also address the larger challenge of providing affordable, high quality long term care. Critical as the family caregiving system is, families alone cannot meet the challenge of Alzheimer's disease. For many, the time will come when care at home will not be an option — because there is no caregiver available, because they need more care than their family can provide, or because the caregiver becomes too old and frail to continue.

For more information, or to contact Alzheimer's Association, see their website at: www.alz.org