Informal Caregivers of Disabled Elders with Long-Term Care Insurance


U.S. Department of Health and Human Services

Informal Caregivers of Disabled Elders with Long-Term Care Insurance

Executive Summary

Marc A. Cohen, Ph.D.
Vice President, LifePlans, Inc.
President, Center for Health and Long-Term Care Research

Maurice Weinrobe, Ph.D.
Professor of Economics, Clark University

Jessica Miller, M.S.
Senior Research Associate, LifePlans, Inc.

January 2000

This report was prepared under contract between the U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP) and LifePlans, Inc. Additional funds were provided by the Robert Wood Johnson Foundation Home Care Research Initiative. For additional information about the study, you may visit the DALTCP home page at or contact the ASPE Project Officer, Pamela Doty, at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, SW, Washington, DC 20201. Her e-mail address is:

In April 1999, a report entitled "A Descriptive Analysis of Patterns of Informal and Formal Caregiving among Privately Insured and Non-Privately Insured Disabled Elders Living in the Community" was submitted to the Department of Health and Human Services and the Robert Wood Johnson Foundation. The purpose of that report was to provide basic descriptive statistics on disabled policyholders of private long-term care (LTC) insurance who had accessed insurance benefits in the community. Information about these individuals and their service use was compared to similar data among non-insured disabled community-dwelling elders.

As part of the study the primary informal caregivers of these disabled insured claimants were also interviewed. These were the individuals identified by the claimant as helping the most with everyday activities but who did not receive payment for doing so. In the April report, we showed that these individuals continued to provide a great deal of care even as the claimant received substantial amounts of formal (paid) care. Moreover, many of the informal caregivers indicated that they had not reduced the amount of care they were providing to their disabled care-receiver since receipt of insurance benefits. Finally, an overwhelming majority of informal caregivers said that the presence of insurance-financed formal care had reduced the level of stress associated with caregiving.

The focus of the April report was on claimants. The purpose of this supplementary report is to provide more information and greater detail on the primary informal caregivers (ICG) of disabled private LTC insurance policyholders who have accessed long-term care benefits and are living in the community. We also compare key characteristics of these individuals to informal caregivers of non-privately insured disabled elders.1 Caregiver effort expended on privately insured and non-privately insured disabled community-dwelling elders is measured as well. Finally, we evaluate caregiver perceptions regarding the value of the LTC insurance policy and summarize and discuss the implications of findings.

Key findings are presented below.

The Demographic Profile of Informal Caregivers

  • Informal caregivers of privately insured disabled elders are often elders themselves, are well educated, typically female, and people who generally enjoy high economic status.

  • A large number of ICGs are married to their care-receivers. The majority of informal caregivers for the privately insured are spouses, whereas for the non-privately insured, relatives other than a spouse provide the bulk of care.

  • Whether or not formal care substitutes for informal care is related to the demographics of the caregiver. For adult children it is more common for formal care to substitute for informal care, but this is not generally the case for spouses.

  • A mere 6% of caregivers of the privately insured has children under the age of 25 living in their homes. Thus, while the problems of the "sandwich" caregivers are important and socially significant, it must be emphasized that this group is not a substantial component of this sample of informal caregivers.

The Care Provided by Informal Caregivers

  • The majority of the caregivers in our sample reported that they have been providing informal care to the insured for four years or less (83%), with most saying they have provided care for between two and four years (69%).

  • On average, ICGs help claimants with 2.6 ADLs. As the severity of ADL dependency increases (i.e. more ADLs), the likelihood that a spouse will be the ICG increases. Only 30% of non-spousal ICGs care for claimants with five or six ADLs, compared to 40% of spousal ICGs in that category.

  • Caregivers provide an average of 39 hours of help per week, with a median of 24 hours. For those ICGs that were working more than 30 hours per week, this average drops to 19 hours of help per week with a median of 12 hours.

  • Spousal ICGs caring for severely disabled claimants (e.g. those with five to six ADL limitations) are much more likely to provide 40 or more hours per week of care than are children caring for similarly disabled individuals -- 56% versus 18%.

  • Paid helpers provide complementary help to unpaid caregivers. Where the ICG is providing eight hours per week or less of ADL help, paid help also tends to be low. Where the ICG is providing large amounts of ADL help there are more frequent uses of paid help for large blocks of time.

Employment Status

  • Thirty-five percent (35%) of informal caregivers of privately insured disabled elderly are currently working.

  • Only 10% of spousal ICGs were currently employed, while employment was much higher among child and child-in-law ICGs -- about two in three.

  • The average weekly hours worked for employed ICGs was 38.

The Impact of Caregiving on Employment

  • The effects of caregiving on the employment of ICGs are pervasive and wide-ranging. The responsibility of providing care for a disabled elder does not mean that one simply leaves the labor force or fails to enter it. It also affects the amount of time one is able to work, the quality of work one is capable of performing, whether or not one can search for a new job or even whether one can seriously consider the offer of a new job.

  • About 7% of all respondents (and 18% of child ICGs) indicated that they had stopped work in order to take care of the disabled claimant.

  • About two-in-five working caregivers said they are currently working fewer hours due to caregiving and two-in-five non-working caregivers indicated that at some point in the past, they had worked fewer hours per week than they would have liked because they were helping the claimant.

  • Forty percent (40%) also stated that they had to take time off without pay with an average of 17 days of work missed per year due to caring for a disabled elder. This represents about 8% of the work year. The average earnings of these employed caregivers are $67,417. Thus, these lost workdays translate to lost earnings of $5,393 per year.

  • About 85% of those who were employed answered that they had at some time had to rearrange their job schedule because of caregiving responsibilities.

  • Sixteen percent (16%) reported that caregiving had kept them from looking for a job and another 11% had to turn down a job because of the care that they were providing. For spousal ICGs, those who had been kept from looking or who had to turn down a job was less than 10%, but 27% of child ICGs had been kept from looking and 20% had had to turn down a job.

The Impact of Caregiving on Emotional Well-being and Stress

  • More than half of the informal caregivers (58%) responded that caregiving bothered them.

  • Over half (55%) stated that they do not sleep through the night as a result of providing care. If one only looks at the instances where the caregiver and care-receiver are living with one another, 66% of caregivers say that their sleep is interrupted because of the care they provide.

  • Providing care has more of an emotional effect on caregivers than physical although about one-quarter of the respondents agreed that caring caused their health to get worse.

  • Most informal caregivers reported that caregiving is hard on them emotionally and limits their privacy and social or free time. Moreover, many feel that the care-receiver needs medical care that they cannot provide and that they have to provide the care-receiver with constant attention.

Comparing Informal Caregiving of Privately Insured and Non-Privately Insured Community-Dwelling Disabled Elders2

  • Informal caregivers of the privately insured disabled tend to be older, more highly educated, and enjoy higher incomes than their counterparts caring for the disabled without private insurance. Moreover, they are more likely to be married.

  • Informal caregivers of the privately insured disabled are about four times more likely to be employed than are those caring for non-privately insured disabled elders -- 35% compared to 9%.

  • Caregivers caring for disabled individuals without private insurance are more likely to live with them. There is also a greater likelihood that these caregivers are adult children, many of whom are unmarried.

  • On average, informal caregivers of the privately insured report providing about 40 hours a week of assistance compared to about 42 hours for those caring for non-privately insured disabled elders.

  • Among employed caregivers, those caring for the privately insured are more likely to have to take time off without pay, to have to rearrange their work schedule to accommodate the care needs of the care-receiver, and have had to quit a job to continue to provide care.

Impact of Private Long-Term Care Insurance on Caregiving

  • About two-in-three caregivers indicated that the presence of insurance-financed formal care has reduced their general stress level.

  • In the presence of insurance benefits, roughly two-in-three informal caregivers have not reduced the level of care that they provide.

  • For most informal caregivers, formal care does not substitute for informal care. This was true across types of caregivers and across severity of disability.

  • About half (47%) indicated that in the absence of the private insurance to pay for home care services, the care-receiver would have to seek institutional alternatives.


One of the most important findings of this study is that despite caring for very disabled elders, many caregivers of privately insured care-receivers are able to continue to work, especially adult children caregivers. While they may continue to experience inconveniences (e.g. having to rearrange their schedule, missing days of care, and others) they have not had to drop out of the labor force completely.

The differences in care provision and caregiving experience between spousal and non-spousal caregivers is stark. For the most part, spousal caregivers care for the most disabled claimants, provide more weekly hours of care, and provide much more hands-on assistance with basic activities of daily living. Even when the disability level of the care-receiver is held constant, spousal caregivers provide much more care than do non-spousal caregivers. Not surprisingly, they also experience greater emotional stress.

Informal and formal caregiving appear to be complementary. The presence of insurance-financed formal care does not significantly reduce the magnitude of caregiver effort. This effort does entail certain self-perceived health risks. Roughly one-quarter of caregivers indicated that their health had worsened as a result of their caregiving activities. How to minimize such risks should be an important component of caregiver training and support.

Not captured by the quantitative data are the individual experiences of caregivers themselves. While caregivers indicated that the presence of insurance does reduce their general level of stress they continue to experience daily difficulties even when significant amounts of formal care are provided. Many respondents just wanted to have the ability to talk to someone about their caregiving experience. They also indicated that they could use additional information about how to be more effective and how to cope with the daily stresses of caregiving. Finally, many indicated that they were not adequately prepared to provide care. The implication is that even when private insurance is available to finance significant amounts of care, ongoing support for informal caregivers is needed. Such support needs to address the emotional, and for some, the physical aspects associated with caregiving.


  1. We use the term non-privately insured to highlight the fact that many elders have a form of public insurance in Medicaid.

  2. To be included in the comparison sample, the informal caregivers had to be caring for disabled elders that met a minimum disability threshold of at least two of six ADL limitations or cognitive impairment.

The Full Report is also available from the DALTCP website ( or directly at