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Care Providers: Family and Friends

By Barbara Resnick, PhD, CRNP, Professor, OSAH, Sonya Ziporkin Gershowitz Chair in Gerontology, University of Maryland School of Nursing

Some older people have family members, friends, or neighbors who are willing and able to provide help and care. Such people may be called caregivers. Occasionally, members of religious or other groups help or take over the role of caregiver altogether at no or low cost. Caregivers may provide help with basic activities (such as eating, dressing, and bathing), household chores (such as cooking, housecleaning, shopping, paying bills, and mowing the lawn), and other tasks (such as taking drugs as prescribed).

Of the nearly 36 million people aged 65 or older in the United States, about 7 million need a caregiver's help on a daily basis. More than 22 million caregivers in the United States provide ongoing care for older people. They may provide care for a few hours a week or around the clock.

Most caregivers are the spouses or children of the people they care for (see Family Caregiving for Older People), and most are women. About two thirds of caregivers work full- or part-time in addition to providing care.

Determining whether an older person needs care can be difficult. Observing how well an older person is able to do the following can help concerned family members make this decision:

  • Eating: Is clothing frequently stained by food? Is the person losing weight without an obvious explanation?

  • Getting in and out of a chair or bed: Does the person rock back and forth several times before actually getting up? Are nearby furniture items or objects used for support? Does sitting down seem to involve falling backward into a chair? Does the person fall frequently when getting out of the bed or a chair?

  • Using the toilet: Is clothing soiled or wet?

  • Bathing: Are the person's skin and hair dirty?

  • Grooming: Does the person look rumpled or disheveled?

  • Walking: Does the person seem unsteady or have falls?

  • Taking prescribed drugs: Do prescriptions last longer than they should? Are prescriptions used up faster than they should be? Are pills mixed together in one container?

  • Using the telephone: Does the person seem to understand phone conversations? Is the phone consistently answered when the person is known to be home?

  • Managing money: Are bills unpaid, leading to overdue notices? Has the person repeatedly been notified of overdrafts on accounts?

  • Getting groceries and preparing food: Is sufficient food available? Are food items kept past expiration dates? Do pots and pans seem to become scalded repeatedly? Has the stove been found left on?

  • Doing laundry: Are clothes clean?

Rewards and Challenges

Caregiving can be very rewarding, even when it is hard work and causes stress (see Effects). Many people choose to care for a spouse, partner, or parent out of love and respect. They find new meaning in their own life by making a difference in another person's life, even if their efforts are not always appreciated. However, no one can ever be fully prepared for the challenges of caregiving.

Physically, mentally, financially, and emotionally, caregiving can be demanding, as in the following situations:

  • Caregivers may have to do all household tasks, dress and bathe the person, make sure the person follows the prescribed drug regimen, manage the person’s finances, or a combination.

  • They may spend their life’s savings while they care for a dependent parent or spouse, or they may have to quit their job to care for the person.

  • They may have to continually attend to the person’s emotional needs.

  • They may have to give up activities they enjoy.

  • Family members may disagree or argue about who should provide or pay for the care and about other aspects of care.

The demands may be more trying when caregivers themselves are frail, have been thrust into their role unexpectedly or reluctantly, or must care for someone who is uncooperative or combative.

The many responsibilities and conflicts that come with caring for an older person can isolate a caregiver, compromise relationships, and threaten job opportunities. They can lead to mounting anger, frustration, guilt, anxiety, stress, depression, and a sense of helplessness and exhaustion. These feelings are sometimes called caregiver burnout. Burnout can affect anyone at any time but is more likely when the person being cared for cannot be left alone or is disruptive overnight. In the worst cases, when caregivers are unaware of or are unable to obtain help, burnout can lead to abandonment and even abuse of the older person (see Elder Abuse).

To determine how to provide the help an older person needs and to avoid caregiver burnout, caregivers often need to talk with different practitioners, including a social worker, a care manager (a specialist trained in making sure that older people receive all the help and care they need—Geriatric care managers), the primary care practitioner, a nurse, and/or physical and occupational therapists. Caregivers can also use strategies to prepare themselves for caregiving and to avoid caregiver burnout.

Long-Distance Caregiving

In a modern, mobile society, family members sometimes live hundreds or even thousands of miles apart. Such distances complicate efforts to ensure that older family members receive the care that they need. Long-distance caregivers—usually adult children—have many challenges.

Good communication is often difficult to maintain. Family members may feel that they never get a complete or accurate impression of how the older person is managing or what is needed. Even when needs are understood, family members may feel there is little they can do for the older person unless they are there to do it.

Family members can take several steps to make helping from a distance less worrisome:

  • Scheduling a regular time for phone calls, which can be reassuring for everyone

  • Communicating by e-mail or Internet videoconferencing with a computer-mounted camera

  • Finding a person who can visit their loved one regularly and who agrees to call them immediately if questions or concerns arise

  • Arranging for participation in some type of meal program (such as Meals on Wheels) if shopping, meal preparation, and eating are concerns

  • Installing a home security system if security is a concern

  • Setting up a personal emergency response system (medical alert device) if falling is a concern

Also, family members should have copies of any advance directives, such as a living will or durable power of attorney for health care, so that they can help if their loved one needs emergency treatment.

Family members can get help from people who are familiar with resources in the community where the older person resides. The older person’s primary care doctor may be helpful in arranging for local assistance. Or family members can arrange for a geriatric care manager to oversee the caregiving and health care. However, family members sometimes believe they have no other choice than to go and help directly. The Family Medical Leave Act permits people to keep their job while taking up to 12 weeks of unpaid leave to attend to a dependent family member. Only large employers are required to provide this protection, and there are other restrictions, such as those about employee eligibility.

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