Family Caregiving-Data Show Both the Burden and Benefits
Beal, Eileen, Aging Today
Increasingly, studies are showing both the burden borne by family caregivers and the benefits of their contributions to American society. Recently, several studies have been released with extensive analysis, charts and graphs based both on new research and on fresh examinations of existing data. They help draw a picture of growing need in a system ill-prepared to deal with the demands of chronic care.
"Caregivers are a population at risk," states A Portrait of Informal Caregivers in America, 2001. This chartbook from the Robert Wood Johnson Foundation (RWJF) and Foundation for Accountability reports on findings from a May 2001 online survey with II populations who are providing care to people of all ages. The report continues, "Many caregivers are depressed, and they feel isolated and burdened. Their physical and mental health is worse than [that of] the general adult population, and their health status shows classic symptoms of stress. If they bum out, both their loved one and society suffer."
The 52-page document, which can be downloaded as a PDF file from www. rwjf.org or www.facct.org, examines the roles and experiences of informal family caregivers, the health system's responsiveness to them, how easily they access aid, and how well they are prepared for the future. The results show that "what caregivers provide most (83%) is emotional support to the care recipient." (Other major types of assistance caregivers provide are help with transportation, guardianship or legal matters, activities of daily living and healthcare.)
Almost half of the respondents (47%) observed that those receiving care find it very difficult or extremely difficult to tolerate the emotional problems or symptoms associated with their condition. Additionally, half of the caregivers in the survey said the burden of caregiving is frequently or sometimes too much to handle, and 55% of the caregivers said they feel isolated, a percentage that increases with the duration of caregiving. Although four in to caregivers (39%) said they needed respite care, only about half (19%) had received this service in the 12 months prior to the survey.
The researchers found that only 43% of all responding caregivers "feel involved in healthcare decisions for the care recipient." Also, about half (48%) of the caregivers in the study said that the care recipient's health provider made the goals of treatment clear, helped people understand what needed to be done, and motivated patients and those who support them to comply with the demands of treatment.
In addition, merely 32% of the respondents suggested someone whom caregivers could turn to if they became overwhelmed; 48% believe the healthcare team should be more sensitive to their feelings; and 53%-barely half-agreed that a healthcare provider listened carefully "to [their] hopes, fears and beliefs as much as [they] wanted." Regarding their own preparation for the future, fewer than half of the caregivers surveyed had completed a living will (45%) or durable power of attorney (49%) to ensure that their own healthcare wishes are carried out.
The study's authors stressed that measuring and reporting on the experiences of caregivers is "essential to learning how to support these loving, intimate relationships with more accessible and affordable support services, more involvement and recognition from the healthcare community, and more respite."
WHO THEY ARE
Another informative overview of data titled "Who Provides Informal Care to Older Persons in the Community?" was presented at the Third International Family Caregiver Conference in Arlington, Va., last fall by Lee B. Shirey, research associate at the Center on an Aging Society, part of Georgetown University's Institute for Health Care Research and Policy.
Shirey focused on a caregiver supplement to Duke University's 1999 National Long Term Care Survey (NLTCS) and 1998 data from the University of Michigan's Health and Retirement Study. …