In over 22,000,000 households Americans are performing a service of love whose economic value is over $200 billion per year. Three-quarters of these Americans are women. They spend an average 18 hours per week performing this service, although one in five spends over 40 hours per week. Who are they? They are family caregivers -people who help with the personal care, chores or household affairs for an elderly parent, spouse or relative.

We usually think of long-term care as meaning nursing home, assisted living or home health care, but in fact 80 percent of long-term care is provided by family members at home. That's because most seniors "age in place". Only about 4.5% of people 65 and older (1.56 million people) live in nursing homes; even among those 85 and older, the percentage is just 18.2%. About one million seniors live in assisted living facilities, according to the National Center for Assisted Living. The rest, slightly more than 90% of all seniors, live at home or in residential alternatives such as senior retirement communities. That is, of course, the way seniors want it. Almost all seniors report that they have no intention of leaving their homes, and in fact 70% of seniors live out their lives in the same home where they lived at age 65.

Aging itself, mobility problems, dementia, heart disease, cancer, stroke and arthritis are some of the commonest reasons requiring the involvement of family caregivers. The types of services they provide vary greatly. Some seniors just need help with household activities related to living independently, such as grocery shopping, transportation, housework and financial management. Virtually all family caregivers help with one or more of these. For seniors with more limitations, caregivers assist with personal tasks, called simply Activities of Daily Living (ADL's). The basic ADL's are walking (including getting in and out of chairs), dressing, bathing, eating and toileting. More than half of all caregivers help with at least one ADL, and about a third help with at least three.

Most family caregivers describe their experience in positive terms, such as citing the rewards of being helpful to a loved one. Still, the sacrifices, stresses and difficulties they face are very real. For example, for the two-thirds who are employed, most have to make adjustments to their work schedules like going in late, leaving early, making phone calls or taking time off during the work day. The majority of employed caregivers report a negative impact on earnings, and many must quit their jobs altogether to care for their loved ones. The term "caregiver burden" is sometimes used to describe the personal toll of providing care. Caregiver burden may take the form of emotional stress, worry, depression or anxiety. It may entail serious financial hardship. And, it can have significant physical manifestations, even increasing mortality risk.

Caregiver burden is highest among those who face the greatest demands, especially if responsible for loved ones with advanced dementia. But another key factor is associated with high caregiver burden: the absence of active coping and management strategies. Those who have adopted such strategies report significantly less negative impact on their personal well-being. Here are some important examples:

• Learn as much as possible about your family member's condition and its effects on him or her.
• Protect personal time for activities that you enjoy or are important to you.
• Exercise, get adequate sleep and eat a balanced diet.
• Watch out for symptoms of depression such as persistent sadness, lack of interest or pleasure, excessive fatigue or sleep difficulty. Contact your physician if you experience these.
• Use your network of friends and family for support, or join a support group.
• Get help! Ask family members, friends and neighbors to pitch in. Arrange for respite care or part- time home care if needed. Contact the Area Agency on Aging, your church or synagogue or one of the many excellent caregiver support organizations.

Family caregivers are indeed the backbone of long-term care. Their importance will only increase as our population ages and seniors increasingly spend their later years in non-institutional settings. We all owe them a great debt of gratitude.

Where to get additional information:
There are many excellent resources for caregivers. The Area Agency on Aging would be a good start. Here are few other examples:
National Family Caregivers Association, 1-800-896-3650 www.nfcacares.org
American Association of Retired Persons, 1-800-424-3410 www.aarp.org
The Well Spouse Foundation, 1-800-838-0879 www.wellspouse.org
National Alliance for Caregiving, 4720 Montgomery Lane, 5th Floor, Bethesda, MD 20814 www.caregiving.org

April, 2003