Caregiving

Most people cherish their independence. But many older people eventually need and depend on help with performing either minor or essential tasks. The people who provide this help are usually referred to as caregivers.

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. This need develops primarily because of the effects of diseases that become more common with aging. The types of needs vary greatly. Some older people need help with everyday activities, such as eating, dressing, and bathing. Others need help with household chores, such as cooking, cleaning, shopping, paying bills, and mowing the lawn. Even people who are largely independent benefit from occasional help—such as receiving a ride to a friend's house or assistance with transporting a heavy item—and from the interest and involvement of family members and neighbors.

The costs of caregiving are enormous. The United States spends more than $130 billion a year on the care of older people with a disability or chronic disease. About two thirds of this cost is paid for by the federal and state governments, and the remaining one third is paid for by the older person or family members. This estimate does not include indirect costs, such as those incurred when caregivers miss work to care for a loved one. Nor does it include the additional amounts that would be needed if family and friends did not provide care free of charge. This family care is estimated to be worth about $200 billion.

Who Are Caregivers?

The number of caregivers continues to grow. More than 22 million caregivers in the United States provide ongoing care for older people for periods of time ranging from a few hours a week to around-the-clock.

Most caregivers are the spouses or children of the people they care for, and most are women. About two thirds of caregivers work full- or part-time in addition to filling their caregiving role. Many come to the role having never imagined they would have to take responsibility for their partner or parent and having no special caregiving skills. They learn these skills on the job.

Other relatives, friends, neighbors, and members of religious or other groups may assist family caregivers or take over the role altogether. Occasionally, families hire health care practitioners, such as licensed practical nurses (LPNs) or nurse's aides, to help care for a parent or spouse.

Rewards of Caregiving

Caregiving can be very rewarding, even when it is hard work and causes stress. 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. Some caregivers report great satisfaction in giving back to someone who has given so much to them. Others report that caring for a parent provides a good role model for their own children. Caregivers who provide care out of love and a desire to help another person report greater personal benefits from caregiving than those who provide care merely out of a sense of duty.

Challenges in Caregiving

No one can ever be fully prepared for the challenges of caregiving. The tasks and responsibilities involved can be demanding, even more so when caregivers themselves are frail, have been thrust into their role unexpectedly or reluctantly, or must care for someone who is uncooperative or combative.

Physical challenges: Caregiving presents physical challenges to the person who provides care. The caregiver may need to assist with or even assume complete responsibility for physically demanding tasks, such as doing laundry or housekeeping. Or the caregiver may need to help with more basic needs, such as bathing or dressing the person. The caregiver must be sure of her physical capability to provide care. For example, a man who has had a stroke may need his wife's support while rising from a bed, chair, or toilet or while walking. But his wife may be unable to lift him if he falls and could be at risk of injuring herself if he falls while leaning on her for support.

Mental challenges: People who are confused because of dementia often are unable to carry out everyday activities that require cognitive skills, such as the ability to remember, organize, and plan. The caregiver may need to assist with or assume responsibility for the person's medications, including understanding what they are for and how they are to be taken. Or the caregiver may have to manage the person's money. The caregiver also needs to plan activities and modify the home in ways that provide a safe environment that is stimulating yet not overwhelming for the person with dementia. Doing so requires attentiveness to details and some creativity.

Financial challenges: Many older people subsist on limited funds available from savings, pensions, and Social Security payments. The medical disorders that make older people dependent often pose enormous financial burdens that overwhelm their assets.

Caregivers must be aware of any financial responsibilities that they face when they begin to care for people. For example, children may need to assume some financial responsibility for their dependent parents and, without financial help, may spend their life's savings in the process. A caregiver may face additional household expenses for food, utilities, and transportation. If remodeling must be done, additional expenses may be incurred. A caregiver who is employed may need to reduce work hours or quit altogether to provide care. The resulting loss of income can in turn create more financial challenges.

Emotional challenges: Family caregivers commonly experience conflicting feelings of affection, frustration, a wish to help, anger, sadness, satisfaction, guilt, and a sense of loss for the deteriorating health or abilities of their partner, spouse, parent, or friend. These varying emotions can occur unpredictably and simultaneously and can be made worse by the expectations of the person who needs care. For instance, some older people come to expect more from their caregivers than is necessary, because relying on others may be easier and more emotionally rewarding. Other truly needy older people may refuse all outside help, instead insisting that family members attend to their own needs. This puts a responsible caregiver in the position of making major personal sacrifices for an unrealistic parent or partner or arranging needed care over the person's fierce objections. Either solution brings mixed feelings with it. In addition, many caregivers, especially women, believe that society expects them to give up their own lives to care for others.

Caregiving often involves sacrifices, restrictions, and competing responsibilities. Younger caregivers have less time to spend in activities they enjoy and may get caught between caring for an older parent or friend and caring for their own spouse or partner or for their dependent children. They are sometimes referred to, therefore, as the sandwich generation.

Siblings may argue over dividing caregiving responsibilities, the burden of which almost always falls disproportionately on one. The patience of family members may be sorely tested when a person needing care lives under the same roof. And caregivers who are themselves old, such as the spouse of a person needing care, may have their own complex health and financial concerns that require almost as much attention as those of the person they care for.

The many conflicts and responsibilities that come with caring for an older person can isolate a caregiver, compromise relationships, threaten job opportunities, and lead to mounting anger, frustration, guilt, anxiety, stress, depression, and a sense of helplessness and exhaustion that is 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 their older charges.

Getting Help

A caregiver must find a balance between the rewards and challenges of caregiving. Although there is no easy fix for the challenges, there are strategies for coping with the conflicts and mechanisms for occasionally relieving the burdens. Determining what kind of help an older person needs and how to get that help often involves working with many different practitioners, including doctors, nurses, physical and occupational therapists, social workers, and case managers.

Physical help: Often, caregivers can help people with physical disabilities gain greater independence by making or arranging for minor home modifications. For example, installing grab bars over the bed or grip bars in the bathroom by the toilet and tub can help a person rise from the bed, toilet, or tub without assistance. Other equipment, such as a shower chair or bathtub bench, can help a person shower or bathe safely. Placing a night light in the bathroom or a commode by the bed can help prevent overnight problems, such as falls and episodes of incontinence. A chair- or bed-bound person can use mechanical pincers to grab distant objects or objects on the floor without getting up or bending down.

Nurses and occupational therapists often can evaluate a home and recommend these and other measures to improve an older person's safety and reduce his physical dependence. Physical therapists can teach special techniques that can reduce the risk of injury and exercises that can improve strength and balance. Health care practitioners can also teach caregivers techniques to improve their ability to provide care. For example, they can teach a caregiver how to use a gait belt (a canvas strap wrapped around the older person's middle section) to help the person walk more safely.

Mental help: Paper and pen organizers or computer software can help caregivers list, organize, and track information about appointments, medications, and finances related to the person for whom they are caring.

Financial help: Meeting the additional expenses that may arise with caregiving begins with understanding and taking advantage of the financial resources of the person for whom care is being provided. Long-term care expenses of dependent older people may require several forms of insurance. Inexpensive forms of Medigap and other private supplemental insurance cover only the deductibles and co-payments that a person with basic Medicare coverage incurs, whereas more costly forms cover many more expenses, such as prescription drugs.

When finances are limited, older people can pay for expenses with a reverse mortgage on a home; by using a life insurance policy as collateral for a bank loan; by borrowing money directly from the policy (viatical loan); or by selling the policy to a third party for a portion of its cash value (viatical settlement).

Caregivers have other ways to control their expenses or increase their financial resources. Some caregivers can benefit from the medical-expense deductions and other tax credits that come from claiming an older person as a dependent. They may also be able to take medical-expense deductions for home modifications that provide a clear medical or safety benefit. Employed caregivers may have access to flexible-spending accounts, which allow allocation of pre-tax dollars toward meeting predictable expenses incurred through providing care. Free or low-cost programs may be available through state or local programs, churches, or other community organizations that assist with expenses relating to transportation, home modifications, or in-home help from a nurse's aid.

Emotional help: Many strategies are available for relieving the emotional burdens of caregiving, the most important of which is taking personal time out. Relaxing or engaging in enjoyable activities allows caregivers to recharge their batteries. Support groups for caregivers, in which the challenges of caregiving are discussed, can be helpful.

Help from the community: Caregivers can do only so much as individuals, and the help they may receive from other family members or friends may not be enough. Additional help may come from the community. Programs in the community that provide assistance with and relief from the various demands of constant caregiving are sometimes referred to as respite-care programs.

One option may be to locate and use a program that offers supervision and activities for the older person for a few hours. The caregiver can then run errands, get a haircut, or perhaps just take a nap. Adult day care centers have filled this need in many parts of the country. An older person can be taken to an adult day care center for an occasional visit or scheduled for several days a week. Most adult day care centers provide transportation, and all provide supervised activities, hot lunches, snacks, and drug monitoring. Some adult day care centers also provide check-ups with health care practitioners, such as nurse practitioners, dentists, doctors, and podiatrists, and assistance with bathing.

Alternatively, home health care agencies can provide a home health care worker with the necessary skills to assume caregiving responsibilities for a period of time during the day. Cooperatives are sometimes formed by families who provide assistance to each other, thus allowing for an inexpensive form of care. However, because of the difficulties of transporting people with multiple disabilities, cooperatives are not used too often.

Nursing homes, personal care homes, and assisted living communities that already have 24-hour staffing can sometimes provide overnight care, often for several days or longer, and include some nursing care. These options are particularly helpful when a caregiver wants to take several days of vacation and the older person needs 24-hour assistance. However, these facilities are typically more expensive than adult day care centers.

See the sidebar Does this Person Need Care?

See the sidebar Long-Distance Caregiving.

See the sidebar Strategies for Avoiding Caregiver Burnout.