Family caregivers are being asked to perform more complicated tasks than ever before, and longstanding assumptions about caregiving barely begin to encompass the responsibilities that now come with the job, according to a new report.
The AARP Public Policy Institute/United Hospital Fund report, called Home Alone, outlines the range of responsibilities that many family caregivers take on and highlights the challenges they face in today's complicated health care environment. Activities long associated with caregiving — helping older family members and loved ones bathe, dress, shop, cook and manage household chores — are still fundamental, but caregivers are now often required to provide many other services, including medical and nursing tasks.
Among the report's findings:
- Nearly half of all caregivers surveyed provide some medical and nursing tasks.
- Three out of four of these family caregivers manage many kinds of medications, including intravenous fluids and injections. Almost half administer five to nine prescription medications every day, and almost 20 percent deal with 10 or more drugs. Family caregivers who manage medications report that it is time-consuming, that they are afraid of making a mistake and that family members can be uncooperative.
- A third of family caregivers who perform medical or nursing tasks provide wound care, such as changing postsurgical dressings, ostomy care, tending to bedsores and similar tasks. Two-thirds of these caregivers are afraid of making a mistake and are uncomfortable performing such invasive care.
- More than half of family caregivers who perform medical or nursing tasks feel that they have no choice: There is no one else to do the job, and insurance wouldn't pay for help.
- Most family caregivers who provide help with five or more medical or nursing tasks believe they are making an important contribution, primarily helping their family member avoid placement in a nursing home. However, they are also more likely than those who perform fewer tasks to report feeling depressed or helpless. More than a third reported being in fair or poor health.
The study was based on an online survey of 1,677 family caregivers, all of whom had provided unpaid care to a family member over the previous 12 months.
As more burdens are placed upon family caregivers — and as more older people will be living with chronic health conditions — a new approach to caregiving is essential, the report concludes. Among its recommendations:
- Educators in medicine, nursing, social work and allied health should look at today's family caregiving realities to determine how their coursework can be modified and strengthened.
- Health care professionals and provider organizations (hospitals, home care agencies, nursing homes, etc.) should do more to train and support family caregivers, especially those who take on demanding medical or nursing tasks.
- Federal and state policymakers should consider caregivers' needs when developing new models of care coordination because goals such as reducing unnecessary hospitalizations and preventing medical errors depend on family caregivers' vigilance, knowledge and training.
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