U.S. Department of Health and Human Services
This report was prepared under contract #HHS-100-80-0157 between the U.S. Department of Health and Human Services (HHS), Office of Social Services Policy (now the Office of Disability, Aging and Long-Term Care Policy) and Mathematica Policy Research, Inc. For additional information about the study, you may visit the DALTCP home page at http://aspe.hhs.gov/daltcp/home.htm or contact the office at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, SW, Washington, DC 20201. The e-mail address is: webmaster.DALTCP@hhs.gov. The DALTCP Project Officer was Robert Clark.
A major proportion of the care received by the elderly in the United States is provided informally by their family and friends. The National Long Term Care ("channeling") Demonstration was funded by the United States Department of Health and Human Services to evaluate the impacts that the provision of coordinated community care services would have on the frail elderly, including impacts on informal caregiving. This report is the first in a series being prepared on informal care in the channeling demonstration, and analyzes the data collected in baseline interviews conducted with the primary informal caregivers identified by a subsample of elderly enrolled in the demonstration. Since the information on the interviews is essentially free of the effects of channeling, it lays the groundwork for subsequent analyses of the impact of channeling on the informal caregiving available to elderly persons whose poor health and fragile support system were considered to put them at risk of institutionalization.
This baseline report explores several issues central to informal caregiving: the composition of the informal care network, the types and level of care provided by that network, financial assistance provided by informal caregivers, and their well-being. Past research in these areas has presented an overall picture of informal caregiving to the elderly as primarily personal care and household tasks performed largely by the wives, daughters, and daughters-in-law of the care recipient. Caregiving has generally been found to be provided by one or two persons and to involve substantial commitment of caregiver time. The literature suggests that financial assistance is less often provided, although caregivers who do provide it (typically children) often commit considerable amounts to the elderly person's financial support. Caregiving has been found to be emotionally, and to a lesser extent physically and financially, stressful and caregiver well-being can be adversely affected by the circumstances and effort associated with it. This report explores each of these issue areas in light of interview data provided by informal caregivers in response to the baseline caregiver survey conducted as part of the channeling demonstration.
Methodology. The channeling demonstration caregiver data were collected in interviews conducted either by telephone or in person with the family members and friends named by elderly members of a special caregiver subsample as the person helping them the most. Eleven percent of the elderly did not name an informal caregiver. These elderly persons were more likely to be women, younger, unmarried, living alone, poorer, and with fewer impairments than the elderly who named informal caregivers. A total of 1,940 primary informal caregiver baseline interviews were conducted between November, 1982 and May, 1983, with an overall response rate of 87 percent. The primary caregivers interviewed in this study were mostly white women, and the majority were the wives, daughters, or daughters-in-law of the elderly recipients of care. Most caregivers lived with the care recipient and a number had other long term caregiving responsibilities as well. About 30 percent of caregivers interviewed had some limitations in their own functional capacity to perform personal care and household tasks, and almost 40 percent were 65 years or older. One-third were active in the labor market, mostly full time, in addition to providing care, and generally contributed substantially to their total family income.
Care by Informal Caregiving Networks. Primary caregivers not only provided information about their own characteristics and caregiving experiences, but also acted as informants about the total network of family and friends providing care to the elderly care recipients. The characteristics profile of the total informal caregiving network as constructed from information provided by the primary caregivers. Most of the elderly naming a primary caregiver interviewed in the survey had at most one other person in their caregiving network. Spouses and children of the care recipients played a major role in these networks, although in over one-quarter of all networks other relatives and nonrelatives were the only members. Most (90 percent) of the networks had at least one person related by blood or marriage to the care recipient, and over 60 percent had at least one live-in caregiver.
Data were collected on the types of care provided by network members--medical care, personal care, help with household tasks (meals, housework, etc.), money management, supervision for personal safety (defined as staying with the elderly person because he or she could not be left alone), socializing (keeping company with the elderly person, other than when providing assistance), and transportation assistance. Most networks provided assistance with household tasks and with personal care. Medical care, transportation assistance, and supervision for personal safety were the types of care least frequently provided. Generally, the larger the network the more likely was the provision of any particular type of help. Networks with spouses and children provided more help than networks composed only of other relatives and friends, and networks with at least one live-in caregiver provided more than those in which no caregiver lived with the elderly person.
Care by Primary Informal Caregivers. Primary informal caregivers reported in greater detail about their own caregiving experiences. Most primary caregivers helped with household tasks such as meal preparation, housework, shopping, and money management. Most also helped with at least one personal care task (help with eating, bathing, dressing, getting in or out of a bed or chair, toileting, and cleaning up after bladder or bowel accidents) and spent time socializing with the care recipient. Spouses (generally wives), daughters, and daughters-in-law were more likely to provide most types of care than other caregivers, although sons often helped with chores and transportation. Primary caregivers living in the same household provided care more often than did those not living with the elderly care recipient.
The level of effort expended on caregiving was measured in terms of average daily frequency of helping with given tasks and average hours per day helping. Caregivers who did not provide assistance were included, coded with zero frequency and hours. On average, primary caregivers helped with at least one task about once per day. Caregivers gave help, on average, more than once per day with tasks such as transfer (assistance getting in or out of a bed or chair), toileting, and medication. Including all the time they spent on personal and medical care, household tasks, and socializing with the elderly person, primary caregivers averaged almost six hours per day on care-related activities. Again, wives, daughters, or daughters-in-law of the elderly provided more frequent care and spent more time on care than other caregivers; those who lived with the care recipient gave more frequent help and more hours of care then caregivers living elsewhere.
Informal Financial Assistance. Financial assistance was provided less often than caregiving. Primary caregivers who were the spouses of the care recipients were not asked about their own financial contributions, but were asked about those of others. Primary caregivers other than spouses were asked to report both their own and up to four others' expenditures on care to the elderly care recipient. As reported by primary caregivers, only about one-third of the elderly received informal financial support (in the form of payment of bills, purchase of food or clothing, or cash contributions) from someone other than a spouse. The large majority of financial assistance networks had only one member, and slightly less than half had one or more live-in financial contributors. Larger networks made larger regular monthly contributions, as did those with a live-in contributor.
Because of the difficulty spouses were expected to have disaggregating regular shared expenses from those specifically due to of the health or disability of their husband or wife, spouses who were named as primary caregivers were not asked about their expenditures related to caregiving. About 45 percent of nonspouse primary caregivers had regular unreimbursed expenses in providing care, averaging almost $85 per month for all nonspouse primary caregivers (including those who did not contribute) and over $190 per month for those caregivers actually providing financial assistance. Medical expenses, purchases of food or clothing, and housing costs were the most frequently mentioned categories of expenditures and, along with home health care, were the most expensive as well. More children of the elderly care recipient and persons living with the elderly person provided financial support than other primary caregivers and children contributed more per month than other caregivers. Sons, in particular, made relatively large average monthly contributions.
Caregiver Well-Being. A number of specific dimensions of well-being were addressed in the baseline caregiver survey. Primary caregivers were asked to report limitations imposed by caregiving in their personal life and family relationships and caregivers under age 70 were also asked to report limitations in employment opportunities. Over three-quarters of all caregivers reported at least one limitation in their personal life and relationships. Fewer experienced limitations due to caregiving in their ability to seek employment, to hold jobs, or to work at the kinds of jobs they desired. However, the number reporting employment limitations was still relatively large, given the predominance of older women caregivers, many of whom were not currently working.
Care recipient behavior problems--such as anger, refusal to cooperate, and confusion--create stressful caregiving situations, and the majority of primary caregivers reported experiencing at least one such problem. Many caregivers were concerned about the ability of the entire set of care arrangements to continue to provide for the elderly care recipient, although most were satisfied with current arrangements and very few envisioned placing the elderly person in a nursing home.
Global measures of the emotional, physical, and financial strain associated with caregiving were asked of primary informal caregivers. They reported higher levels of emotional and physical than financial strain, as expected from the types of assistance generally provided. The wives, daughters, or daughters-in-law of the care recipient and live-in caregivers reported more strain than other caregivers, as did those providing more care and facing more stressful caregiving circumstances. Only about one-fifth of all caregivers reported feeling that their lives were completely satisfying, and the strain of caregiving was negatively associated with this overall measure of quality of life. In general, all aspects of caregiver well-being were influenced by the experience of caregiving; the more care provided in stressful circumstances, the greater the perceived burden and the lower the rating given by primary caregivers to their quality of life.