Discussion and Implications of Survey Results
Previous research shows that the vast majority of older adults with long-term care needs receive care from informal caregivers (Thompson, 2004). The Health and Human Services Assistant Secretary for Planning and Evaluation (2003) estimated that about 7 million caregivers in the United States provide informal care to older people who need assistance with activities of daily livings (ADLs) or other activities in order to live at home in the community. It is anticipated that the aging of society will put more demands on informal caregivers and more individuals will be called upon to be caregivers.
While the literature has long documented that caregivers provide a substantial amount of care and support to older relatives and friends, specific information about the impacts of NYSOFA/AAA caregiver programs and support services has not readily been available to policy makers and program managers. The results of this survey provide concrete, detailed information about the care provided to dependent older adults with significant needs as well as the supports provided to caregivers and care receivers through NYSOFA/AAA services and programs in New York State. Specifically, the survey findings are useful in order to:
- Understand the profile of caregivers in NYSOFA/AAA caregiver support programs and services, and understand the dynamics of their caregiving experience;
- Provide an estimate of the amount of informal caregiving provided to older adults in New York;
- Understand and provide concrete, specific evidence about the impacts of caregiver and care receiver support services; and
- Identify new areas to address that would enable caregivers to best continue in their caregiving roles.
The Significance of Informal Caregivers and Caregiving Consequences
The survey shows that caregivers using NYSOFA/AAA services and programs provide substantial care to vulnerable older adults with significant needs. For example, close to 50 percent of the dependent older adults are aged 85 or older, and a majority of them (79 percent) have at least three activities of daily living (ADL) limitations. Many of them also have health conditions such as Alzheimer's disease or other dementia, high blood pressure, vision problems, and/or arthritis.
Because these dependent elders require intensive care, caregivers bear immense burdens. The top three caregiving burdens reported by caregivers were emotional strain, lack of time for oneself, and physical stress. While informal caregivers usually undertake caregiving tasks willingly and find satisfaction from the experience, prolonged stress from caregiving is hard on caregivers emotionally. Emotional strain may be manifested in: feeling frustrated, angry, drained, guilty, helpless, or uncertain (Gray, 2003; Thompson, 2004). Such emotional strain often puts caregivers at risk of depression, anxiety, drug dependency, or other mental health problems (Haley, Levine, Brown, & Bartolucci., 1987; Miller et al., 2001; Miller & Montgomery, 1990; Young & Kahana, 1989).
In addition, caregivers reported that because of caregiving they didn't have enough time for themselves. As a result, many of them feel fatigue, a loss of self identity, and lower levels of self esteem (Mack, Thompson & Friedland, 2001; Thompson, 2004). Physical strain is another frequently reported caregiving burden. The analysis from this survey revealed that caregivers provided significant assistance to their care receivers in activities of daily living such as bathing, dressing, walking, personal hygiene, etc. Such assistance can be physically taxing, especially if their care receivers are bedridden or wheelchair-bound. The majority of caregivers are older adults themselves (see Caregiver Characteristics section of this Report), and intense physical stress may affect their own health. As pointed out by many researchers, caregiving burden and stress are linked to serious health consequences, including increased risk of heart disease, high blood pressure, poorer immune function, and lower perceived health status (Kiecolt-Glaser et al., 1991; Schulz et al., 1997; Schulz, O'Brien, Bookwala, & Fleissner, 1995; Vitaliano, Zhang, & Scanlon, 2003). Furthermore, a study by Schulz and Beach (1999) found that elderly caregivers who are experiencing caregiving-related stress have a higher risk of mortality than their noncaregiving peers. Because of the potential physical and emotional stress from caregiving responsibilities and the increasing numbers of informal caregivers, the stress of caregiving is now considered to be a public health concern (Fox-Grage & Gibson, 2006; Levin, 2006).
Economic Value of Informal Caregiving
The value of the labor contributed by informal caregivers is substantial, yet the actual value of such uncompensated care is difficult to estimate. However, it is well recognized that the market value of the unpaid labor of informal care is greater than the cost of paid home care assistance (Houser, & Gibson, 2007). According to a recent AARP Report (Houser, & Gibson, 2008), family caregivers who care for those who are aged 18 or older provided an estimated economic value of about $375 billion in the United States and $25 billion in New York State. The AARP report stated that the economic value of informal caregivers exceeds total Medicaid expenditures for nursing home and home and community-based services combined.
As stated in the previous section, caregivers in NYSOFA's survey provide intensive care and/or supervision to a very old and frail population; many of whom have significant health problems and functional limitations. Caregivers reported that they spent an average of 62.6 hours a week providing care. This amounts to an estimated total of 3,265,101 days per year of care being provided by all caregivers in NYSOFA/AAA caregiver support programs and services. The finding in this study - of caregivers’ greater involvement with caregiving tasks than the national average - is corroborated by another study of caregivers of older adults served through California Caregiver Resource Centers that indicated caregivers in those Centers devoted an average of 85.4 hours a week of care to their care receivers (Family Caregiver Alliance, 2008).
Applying the methodology used in AARP's 2008 report, the estimated caregiving value is $10.61 per hour (see Appendix F, Methodology for Estimating Economic Value of Caregiving). Thus, if the work of the 24,073 caregivers participating in NYSOFA/AAA caregiver support programs and services had to be replaced by what would be paid to home care workers, the total caregiving value would be about $16 million a week and close to $832 million per year in New York State.
Impacts of NYSOFA/AAA Caregiver and Care Receiver Support Services and Programs
Because of potential physical and mental health consequences, informal caregivers of dependent older adults are in need of formal services and supports to help alleviate their burden and stress. Caregiver support programs and services can assist caregivers in getting information on how to obtain home and community-based services to supplement the care provided, accessing temporary relief from their care load, and obtaining training and education on how to care for the special needs of their loved ones. Some services also allow families to purchase goods or services (e.g., assistive devices, home modifications) that are helpful to meet their needs and those of their loved ones. These supports, in turn, enable caregivers to continue in their caregiving role in support of older care receivers. It is evident from the survey results that NYSOFA/AAA services and programs have a positive impact upon caregivers and their loved ones and helps to ease the economic burden on our health and long-term care systems.