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 this article.
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.
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 providing funding for 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 for loved ones.
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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