Who Are Caregivers?
Caregivers provide assistance to other people who, because of physical disability, chronic illness or cognitive impairment are unable to perform certain activities on their own. Family members or friends, often in a home setting, can offer so-called informal care. Or paid or volunteer professional care, so-called formal care, can be obtained at home, in the community or from institutions such as nursing facilities or government institutions.
Roughly, 11.1 million Americans of all ages are receiving formal or informal care at any given time. This represents about 4% of the population and is comprised of about 9.5 million receiving care at home or in the community and another 1.6 million residing in nursing or intermediate care facilities. About 25.8 million family caregivers provide personal assistance to individuals 18 years or older who have a disability or chronic illness. And nearly one out of every four households (22.4 million households) is involved in giving care to persons aged 50 or older. About 43% of those receiving care are under the age of 65 and are evenly spread between ages 18 to 64. Children under 18 and receiving assistance because of disability are often characterized under different criteria of caregiving.
Sometimes human caregivers can be replaced or assisted by mechanical devices. These might include special computer systems for communication, special locomotion equipment, and remote vital sign monitoring devices or remote oversight monitoring. Continued technology advances may help relieve the time commitment of human caregivers.
Since the implementation of the Medicare Prospective Payment System in 1999, home health agencies have been looking for more cost-effective ways to provide care. Telehomecare is a more effective way to deliver home care under certain circumstances. Since it is a rapidly developing field, it's difficult to define all telehomecare applications. It usually involves two-way electronic communication between the patient and the formal caregiver such as a nurse or doctor. Communication can occur with two-way radio, telephone or as is usually the case, two-way interactive video using a computer and phone lines or satellite downlink. This electronic face-to-face home visit also requires some means for the care provider--who might be hundreds of miles away-- to access patient vital signs and receive patient-initiated medical tests. The patient or her in-home informal caregiver has been trained to use electronic monitoring or test equipment that sends the relevant video snapshots or numeric data via phone line, or radio wave to the formal caregiver.
Telehomecare is not only more cost-effective but also in many cases it provides a higher quality of care. Here are some of the ways telehomecare is proving to be beneficial:
- Reducing number of visits to the emergency rooms
- Reducing unnecessary visits to physician's offices
- Avoiding unnecessary costly visits by health providers
- Providing education of the patient in early symptom management
- Monitoring vital signs on a 24-hour basis, therefore providing a potential for early intervention and/or prevention of repeat hospitalization
Although electronic monitoring of patients is also a function of telehomecare, it is also becoming a primary source of supplemental home care service not always involving the use of a home health agency. This area of assistance focuses more on the use of devices that warn of problems with homebound people who are often without caregivers for certain periods of the day. This may include 24-hour vital sign monitoring, video surveillance, and emergency signaling systems or GPS locator devices for wandering care recipients.
CHARACTERISTICS OF CAREGIVERS
As mentioned above, caregivers are often categorized as formal or informal caregivers.
Formal Caregivers
Formal caregivers are volunteers or paid care providers associated with a service system. Service systems might include for-profit or nonprofit nursing homes, intermediate care facilities, assisted living, home care agencies, community services, hospice, church or charity service groups, adult day care, senior centers, association services, state aging services and so on. More detail on the services, availability and costs of nursing homes, assisted living facilities and home care agencies are provided in other sections of "Answer Corner" (see About Home Care, About Assisted Living, About Nursing Homes). Information about other formal care providers can be obtained on this site by going to Useful LTC Links and LTC Link's Service Corner.
During 1998, in the U.S., 9.5 million patients were served by home health agencies and 576,000 by hospice care. This care was provided by approximately 13,000 agencies, nationwide. The percent distribution of disorders requiring home care were: diseases of circulatory system–25.2%, injuries and poisoning–9.9%, muscle and skeletal disease–8.8%, respiratory–8.4%, cancer–7.3%, endocrine, nutrition, metabolic, immune–5.4%, nervous system– 4.3%, others–balance of distribution. Of the patients served by hospice, about 76% had cancer or heart disease.
In 1997, there were about 17,000 skilled and intermediate term nursing homes in the US serving 1,609,000 residents. About 1,465,000, or 91% of residents, were age 65 and older. Out of those 1.5 million elderly patients in nursing homes in 1997, as a percent of the total, help was provided with 1 or more activities in the following categories: bathing or showering–96.2%, dressing–87.2%, using toilet room–56.2%, eating--45%, transferring to chair or bed–25.4%.
As of the year 2000, an estimate by NatWest Securities places the total number of assisted living beds nationwide at 1,387,836 beds with total revenue of $33.1 billion. Although assisted living facilities (ALFs) are regulated by the state health departments, data for utilization and cost don't show up in national statistics. And although Medicaid covers some cost for ALFs, the costs of numerous waiver systems used by states aren't shredded out separately but are lumped with Medicaid home care costs. Medicaid paid for care of 7% of ALF residents in 1997. The numbers of people using ALFs are included in those 9.5 million receiving care in the community. A 1996 survey by the American Health Care Association reveals that 59% of ALF residents are admitted from their homes and the other 41% come from nursing homes, hospitals or other ALFs. Some ALFs have found a niche in providing care to Alzheimer's patients and many ALFs are exclusively dedicated only to Alzheimer's residents. This disorder requires constant supervision but not necessarily from the more costly skilled medical staff found in nursing homes. And since at least 5% of those over 65 and 46% of those over 85 suffer from mental impairment, this provides a potentially large market for ALF Alzheimer's facilities
Not all residents of ALFs need care or assistance. Many are there because they want a simpler lifestyle without the worry of maintaining a home and they seek the companionship of other people their own age. They have chosen assisted living because they may need some minor help with IADLs but they anticipate a time when they may need the more intensive care available with an ALF. As of 1996, ALF residents who were independent with ADLs (needing no assistance) were as follows: eating--88%, transferring--84%, toiletting--78%, dressing--58%, bathing--49%. A recent survey of assisted living administrators estimated that 24% of their residents received assistance with 3 or more activities of daily living, such as bathing dressing and mobility. They estimated that about one-third of residents had moderate to severe cognitive impairment.
Informal Caregivers
Informal caregivers are family, friends, neighbors or church members who provide unpaid care out of love, respect, obligation or friendship to a disabled person. These people far outnumber formal caregivers and without them, this country would have a difficult time formally funding the caregiving needs of a growing number of disabled recipients. Depending on the definition of caregiving, estimates of the number of informal caregivers range from 20 million to 50 million people. This could represent about 20% of the total population providing part-time or full-time care. The typical caregiver is a daughter, age 46, with a full-time job, providing an average of 18 hours per week to one or more of her parents. Among adults aged 20 to 75, providing informal care to a family or friend of any age, 38% care for aging parents and 11% care for their spouse. About two-thirds of those caregivers for people over age 50 are employed full-time or part-time and two-thirds of those–about 45% of working caregivers–report having to rearrange their work schedule, decrease their hours or take an unpaid leave in order to meet their caregiving responsibilities. A recent study estimates these people lose about $660,000 in wage wealth over their lifetime because of work sacrifices. And estimates of productivity losses to businesses because of time off for caregiving range from $11 billion to $29 billion yearly. The average amount of time informal caregivers provide assistance is 4.5 years but 20% will provide care for 5 years or longer.
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